Buh-Bye!

I'm off to Hedgebrook in the morning, and while I am incredibly grateful and excited, I'm also feeling a little batshit crazy.

I'm not sure what my posting schedule will look like, as I'm told it's best to immerse yourself into the magic of the place with as few distractions as possible. I will, hopefully, get lots of writing done as well as respite and the chance to meet some extraordinary women. I might take photos and perhaps post them each day with something or other to keep ya'll entertained, but there'll probably only be slim pickins at the old a moon, worn as if it had been a shell. 

In the meantime, keep abreast of that whole cannabis Big Pharma thing. It's all going down tomorrow in Washington, D.C. when the big guns meet. You know how I feel about it all, and never have I been more sure and committed about an issue. Scroll down to yesterday's post, read, share and join us if you are so inclined. Just click this link: Coalition for Access Now

I miss you already.













P.S. If you want to write me a letter, email me and I'll send you the address!

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

Three Ring Circus

Zelda Boden, Circus Performer 1910, via Pinterest

Killjoy! they said when I told them to stop throwing rocks at the grill. Sophie tried to wiggle out of the chair, out from under Henry's insistent arm laid over her lap. Can't I bring her inside? he asked. You hold her! he said to Oliver. Oliver crouched nearby, a pile of rocks at his feet. I circled my three children with the hose, trying not to overwater.

Cubist Spiderweb

Because I don't have it, I spent an inordinate amount of time trying to take the above photo. I was strolling around my estate grounds, talking on the phone when I noticed a strange spiderweb on the rungs of a beat-up old wooden chair. I must have taken twenty shots that showed nothing on my phone and then more with my regular Canon. I considered stopping and justing observing -- why must we always make a record? It took me about a half an hour experimenting before I hung a black dress behind it and snapped the shot.

Have you ever seen a spider web so ziggy zaggy? I thought it must be a Cubist spider, an eight-legged Picasso or Braque who went rogue, away from concentric circles and into a break-up of form. The web was abandoned, pieces of it hanging and stuck with tiny yellow flowers shed from the tree above. If I remember my cubism properly, that break-up of form makes what is concrete, abstract, and in so doing, changes viewpoint. Is there meaning in that? What we think is concrete can so easily be spun into the abstract. One viewpoint shifts to another. Revolution is sparked.

Just something to think about when you don't have the time.

Minds, Hearts and Sores

Santa Monica, March 2014

The mind creates the abyss, the heart crosses it.
Sri Nisargadatta

I'm sorry, I could never keep my fingers off a sore.
Maggie the Cat, Cat on a Hot Tin Roof


That quote by an Indian wiseman/swami came to me over the last couple of days as I drove about the shitty, and I couldn't remember why until I realized that I had posted it along with some meandering prose prompted by the last time I'd seen a Confederate flag flying. That was March of 2014, in Santa Monica, and here's the post that went with it. Go back and read it, and be sure not to miss the comments.

I don't know what else to think about, to tell you the truth. Both my boys have asked me what I think of the whole thing that happened in Charleston. They have the swagger of the teenager, the rebellious I hate this country, don't you? need for affirmation, and I just don't know what to say.

Summer Sounds and Silence

That's late August, 2001 when our family spent our first in nearly fifteen years in Hilton Head, South Carolina. In this photo, my father was entertaining Henry and his cousin Mary by puffing up his cheeks and blowing the air out with a loud and goofy noise. I remember that Henry and Mary were hysterical, over the top amused when he made the noise and then falling silent and expectant as he worked up to doing it again. And again. All of us were beside ourselves with laughter. It's a happy, happy memory.

What you can't see in the above photo and, of course, hear is the sound of Come On Down! that ancient game show refrain that apparently remains very seductive, even in 2015. I have good memories of getting up during the summer and watching game shows on television when I wasn't at the neighborhood pool playing Marco Polo. Oliver, I'm sure, has fantasies of winning all manner of material goods and has asked me numerous times whether he can be a contestant on The Price is Right, but it was Sophie's rapt attention to it that freaked me out. Sophie generally has no interest in television or movies, but she was into this program, and I literally tiptoed back and forth so as not to distract her.

Then there's the lazy no-sounds of summer where you just lie down on your soft bedroom rug and sleep for a bit.

Reader, tell me what you hear on a typical summer day.

Tear Down That Wall

Even a peacenik like me is riled up by what's happened in South Carolina. When is that state going to tear down that fucking Confederate Flag? Or when are WE going to tear down that flag?

I am, uncharacteristically, finding solace in rap.

Interesting Epilepsy Pharmaceutical Side Effects, Part 42

Today's Interesting Epilepsy Pharmaceutical Side Effects presentation will be about the drug ezogabine. If that name is too much of a mouthful for you, we can also call it Potiga because Potiga is simpler, more catchy and conjures up a sweet-smelling weed, perhaps, and the babbling of a baby. I imagine the folks who sit in the airy rooms of the marketing departments of the big pharmaceutical companies have a grand time figuring out what to call the latest chemical being thrust upon the epileptic populace. What would be catchy for a neuronal potassium channel opener? Bart asks his group of young design hotshots. We need something that sounds appropriately serious with a bit of fluff to allay anxiety. Anyone?

I digress.

Some of you particularly alert students of epilepsy pharmaceutical side effects might remember that several years after Potiga was approved for use in adults, the FDA in 2013 had to issue a box warning because of the strange reported side effect of skin discoloration and eye abnormalities characterized by pigment changes in the retina. I heard a  bigwig doctor at last year's Epilepsy Pipeline Conference up in San Francisco speaking to a group of professionals about the drug and the unexpected side effects that showed up years later. She and the group of professionals in the audience actually chuckled when she explained that people were coming into neurology offices with blue lips and fingernails. Reader, you know I love a chuckle and have a sense of humor that is as dark as a guillotine (or is it a gallow?), but hearing those docs titter made me sick to my stomach. I know they were laughing with rue, but I couldn't help but think doctors aren't allowed to laugh about things like this. I was horrified because I had discussed Potiga a couple of years before as a possible add-on for Sophie, and that discussion was with Sophie's pediatric neurologist. No mention of blue lips, nail-beds and eyeballs was made because these were not known, but identified adverse effects included urinary retention, neuropsychiatric symptoms, suicidal thinking or behavior, dizziness and somnolence, QT interval effect, and withdrawal seizures. That list is pretty much par for the old epilepsy drug course, but I decided to pass anyway as I was still in the middle of my sacred vow not to accept any more drugs unless Jesus Christ offered them to me. I imagine that you particularly alert students of pharmaceutical side effects might have also raised your eyebrows that this drug was approved for use in adults back in 2011.  Adults, not pediatric patients.

Ahem.

But that's yet another digression.

The timeline for Potiga is thus:

1. FDA approves Potiga in June, 2011
2. FDA issues Drug Safety Communication warning in April 2013 about the retinal abnormalities and blue skin discoloration
3. FDA announces approval of label changes to the drug to account for the above in October 2013, the so-called box warning.
4. FDA okays current label to manage eye, skin problems June 2015. Here's the information:

News Alerts > Medscape Medical News

FDA Okays Current Label to Manage Eye, Skin Problems With Potiga

Susan Jeffrey

 DisclosuresJune 16, 2015

Evidently,

FDA review of additional safety reports does not indicate that the pigment changes in the retina observed in some patients affect vision," the FDA statement notes. "Skin discoloration associated with the use of Potiga appears to be a cosmetic effect and does not appear to be associated with more serious adverse effects.

You can read the Medscape article here if you'd really like to read it. 

What's my point beyond the rest assured that your blue lips and fingernails are just cosmetic and you have no need to worry about losing your vision except you still have to monitor it and notify your doctor if you feel suicidal or haven't pee'd in days?

My point is that we rarely hear about all the shit going on with epilepsy pharmaceuticals and the chances we are taking every single day when we give them to our children.

When a neurologist claims that they do not have enough information about cannabis to prescribe it or recommend it, they are being disingenuous if they don't also say that they don't know about Potiga or Banzel or Vimpat or Fycompa or Vigabatrin or Felbatol or hemispherectomies or vagal nerve stimulators or long-term use of benzodiazepines. The information about cannabis has been suppressed, buried, stymied for a couple of decades short of a century, but it exists.

What's that expression? The gig is up? The emperor has no clothes? Help me, Rhonda.

Fight the Power as an Italian or at Least Wander Around It*

Italian anti-Fascist fighters, November 1944

Oh dear Lord. Please no one ask me what I think of the woman who identifies as a black person when, in fact, she's a white person. I just don't have it in me to join the discussion and will leave it to less exhausted finer minds than mine to figure it all out. I'm generally fascinated by these kinds of things, but lately I've felt nearly comatose and even bored when the newest wild story comes out. I know that says more about me than anyone else and is probably indicative of mild depression or at least a dissociative disorder, but it's the truth. I'm having a hard time not saying I don't care when people ask me what I think about anything these days. Ironically, one of the things I'll be working on beginning next week when I leave for my residency at Hedgebrook involves my own wrestling with identity -- both mine and my daughter's. Hopefully, I'll be out of this funk and able to organize my thoughts and care.

As I drove around the shitty this afternoon, listening to the interminable talk about the woman who identified as black but who was really white, I did think about my own ethnic identity -- how I'm one-half Italian, one-quarter Syrian and one-quarter Scotch English. If people ask me what I am, I tend to say Italian because I definitely identify more with my Italian ancestry than the Middle Eastern or northern European. I can't tell you why exactly, but I feel Italian. Yesterday's post provoked some really great comments, including Mary Moon stating that she'd heard Italians don't believe in God so much as God's mother. Ha! That's true of me!




I was also thinking about The Powers That Be today, mainly because I got a letter in the mail informing me that our insurance company, Assurant, will no longer be in the health insurance marketplace as of January 2016 so we'll have to start looking for a new individual plan in November during that open season which sounds like we're all going hunting (and wouldn't you love to hunt down an insurance company and hang it, stuffed on your wall?) but actually means you're allowed to enroll in a certain window. Insurance companies and the whole healthcare system in this joint are kind of fascist, don't you think? God, I wish I could say that I don't care, but I'm going to have to care and scurry around and do all the stuff that needs to be done, including making sure that Sophie's Providers are covered and that her drugs are covered and that we can afford the premium and it's all so exhausting and I just don't care.

On the other hand, I've been engaged with one of my favorite Realm of Caring people, Heather, on Facebook who has done an incredible amount of work with this medical marijuana thing. She's one of my heroes, to tell you the truth, and just a pleasure to know as a person. She's indefatigable -- probably not unlike one of those Italian anti-Fascist fighters even if she doesn't exactly identify as one. She shared my recent blog post titled Access Public Service Announcement where I took to task the head of the American Epilepsy Society who was just so dooooooown on that recent Dateline special. It turns out that I did a radio show back in April, and the doctor with whom I spoke was the very same one! You can listen to it here. She was equally as dooooooooown on the radio show, too, and Heather and I can't figure out why these people aren't more excited by our stories (Heather's son has been seizure-free with CBD for nearly two years!). I said would it kill them to express some enthusiasm and marvel a bit because they've been stymied so long? Then again, maybe they just don't care, and lord (or given my Italian identity should I say Mary) knows, I understand that.








*This post is a ramble, a wander and it might make no sense. Read at your leisure.

Musings on Rejection and Dejection or Drejection

I'm a week and a half away from leaving for three weeks, and I feel as if I'm wandering around in circles. I'm not complaining. I just don't know what to do first. My legs are leaden and my head filled with cotton. I feel strangely dejected despite all the good fortune coming my way.

I pulled a card out of my Poet Tarot deck this morning to see what I had in store this week. I got the Five of Mentors. I consulted the guidebook and learned that key phrases for this card are: disagreement within creative groups, being flexible in my artistic vision, choosing battles wisely.

Here's my advice to you, if you're a writer. Submit your work widely and then chill out. Chill out when you get rejections because you'll probably get a lot. For every ten things I've sent out over the years, I get about eight or nine rejections. Years ago, a literary agent sent a manuscript back to me with the words too sad written on the cover sheet. That was it. Sometimes rejections are wildly entertaining, like the one I got over the weekend from a literary journal named after a body of land with some amount of water around it. This is what it said:

Dear Elizabeth, 

Thank you for sending your work. Unfortunately, "Dreaming of Sex During Acupuncture" is not for us. Good luck with your writing and thank you for your interest in [name of journal]. 

Sincerely, 
the editors 

Doesn't that tickle you? I imagine you're wondering about the title of the piece I sent in, and hopefully you'll read the whole thing one day because I'm sending it back out. I'll keep you posted.




While vacuuming my car this morning, I pulled Frank O'Hara's little Lunch Poems out of the door pocket and opened it up, even as I scraped the dead leaves and grit from the floor. My heart is in my pocket, I read from the poem A Step Away from Them. How perfect is that? My other advice to writers is to read all the time and stash small poetry books in weird places.


Have I told you about my obsession with the Annunciation? Given my estrangement from the Roman Catholic faith, I'm not sure why I find it so compelling, but there's something about a big old angel leaning down to softly tell a virginal woman that she'll be carrying the son of God that knocks me flat. There's all this grace inherent in the gesture, I think. My favorite painting is Fra Angelico's Annunciation, and after visiting Italy for the second time and seeing it, after which I had a disturbing encounter with an epileptic young woman, its significance became all the greater. You honestly can't make that shit up, and I didn't. I did write an essay, though, that was accepted for publication by Slow Trains years and years ago. It was rejected at least five times before being accepted. You can read it if you like.

Anyhoo.



Mary Szybist wrote an entire book of poems about the Annunciation. It's called Incarnadine. Here's one of the poems:

Annunciation Overheard from the Kitchen

I could hear them from the kitchen, speaking as if
something important had happened.

I was washing the pears in cool water, cutting the bruises from them.
From my place at the sink, I could hear

a jet buzz hazily overhead, a vacuum
start up next door, the click,
click between shots.

"Mary, step back from the camera."

There was a softness to his voice
but no fondness, no hurry in it.

There were faint sounds
like walnuts being dropped by crows onto the street,
almost a brush
of windchime from the porch -----

Windows around me everywhere half-open ----

My skin alive with the pitch.

Mary Szybist



Maybe I'm weird, but that just blows my tiny little mother mind.™

Pick a Worry

They were lying there so nicely, on the bed in the gray light. I asked them to be still so I could take their photo. You look good, I told them. I like your colors. I felt bad because they'd been packed up for some time. When I lifted them out of the knit bag, dust rose up like smoke from a pipe. I put my lips together and blew. Mavis, on the far left, is in shadow, holding the seizures at bay. She assures me that the partial paralysis that comes and goes is no big deal. Rosalita in red holds the not a present. It's all you've got, she says. Even alone. Green June holds the future, says it's all going to be fine. Shabby Abby holds the folds of the body, assures its wildness and hunger isn't dead. The past, she says, you've got it in you.  Now, Irene there on the edge is ultramarine, beyond the sea. You can't touch the blue in a flame, she says, just burn hot.

Flashback

I lifted this from my own blog, just over four years ago.

Damn.

That's a lot of water flowing under the bridge, isn't it? I'm not sure whether to laugh or cry.

Ya'll should definitely click here and read the comments. Some of you were very, very prescient.

Thursday, June 9, 2011

Sophie's next seizure treatment?

An evidence-based medicine approach to therapeutics requires scientific demonstration of a drug's efficacy as well as knowledge of short- and long-term adverse events that must be balanced against the drug's potential benefits. All of this information is lacking regarding the effects of smoking marijuana in the treatment of epilepsy. More research is needed before patients should consider marijuana for seizure relief, particularly because this represents criminal activity under US federal law and may be accompanied by adverse medical (and legal) events.

Andrew N. Wilner, M.D.

 in an article on MedScape titled Marijuana: A Viable Epilepsy Therapy?: Conclusions

Damn. I was hoping that this might be an option for us.

Saturday Three-Line Movie Review

love and mercy

This is a movie that you don't want to see alone as I did yesterday, as I've done a thousand times in order to keep what's sacred in my head, not have it be disrupted by opinion or someone breaking the spell, but love and mercy so overwhelmed me in its beauty and intensity that I left the theater in tears wishing there were someone, anyone, to hold. Paul Dano literally gets inside of Brian Wilson's head, at least I think he does, and I'm hard put to figure out whether it was the movie or the acting or Brian Wilson's head and thoughts and genius and soul or the whole shebang that left me so undone. I was one of those east coast girls who listened to The Beach Boys through a set of giant puffy headphones connected to a smoky plastic-covered turntable that sat on my green shagged carpeting, the beaches of southern California only a dream, but I had no idea, just absolutely no idea.












More 3-Line Movie Reviews


Not a Three Line Movie Review
While We're Young
Ida
Force Majeur 
Gone Girl
Saint Vincent
Get on Up
Begin Again
Chef
The Immigrant
Cesar Chavez
The Grand Budapest Hotel
Gloria
Labor Day 
Philomena

August: Osage County

Her

American Hustle

The Wild Women of Borneo*

She loves to sit in her room for hours and mess around with various beads and vibrating pillows and baby toys. She can rock back and forth and hit her head over and over on the padded walls. She's not mad, though, or uncomfortable. When she was younger, we called that perseverative behavior, and it was to be avoided. Autistic children have a lot of perseverative behaviors, and whole modification systems have been set up to eradicate these or mitigate their supposed detrimental effects. I guess some of Sophie's behaviors suggest autism, but she's never been formally diagnosed with the disorder. I imagine the nervous system paths of both autistics and epileptics can criss-cross, a formidable yet fascinating jungle. There was a time when that behavior got on my nerves and made me feel a little crazy. I felt overwhelmingly responsible for changing it, fixing it or, at the very least, providing alternative stimulation. I guess there's something depressing about watching Sophie manipulate and mouth the same toys and types of things for more than twenty years, but how much of that is a cultural projection or construct? I'll venture out on the proverbial limb to say, Why the hell does it matter? She's totally content twirling her beads, pressing the vibrating travel pillow to her cheeks and folding herself over into a yoga pretzel position and closing her eyes. You're like the Wild Woman of Borneo! I said this morning from my outstretched perch on her bed where I lay reading. I've been reading incessantly for about 47 years, and there are numerous people who've said, I just don't have the time to read, with the faintest of implications that there are better things to do with time. It's one of the few, if only, things that makes me entirely content. I might be a perseverative reader. I might, too, be a wild woman of Borneo, just without the super curly hair.













*I looked up the origin of the wild woman of Borneo and could find nothing but a book that used the term, written in the 1970s. P.T. Barnum had wild men of Borneo in his turn-of-the-century circus freak show which I imagine was probably out and out racist, but when I use it I imagine something promiscuous, wild and forbidden.