Riding with Min After Baez Sang Dylan

Joan Baez, Royce Hall, UCLA
November 2018

I know that's a bad photo of Joan, but I had to take it quickly, when she first came out or risk the wrath of my fellow concert goers. I like that her head is blurred out in light because that's what listening to her sing did to my soul. Blurred it out into light. I went into the concert so heavy-hearted, the fires, the air, the animals, the earth, the dead and charred land, the piles of dead children, again. It's not too much, it's just so, so awful. Joan sang and sang, though, in what was supposed to be her last Los Angeles appearance. She sang her own stuff and Bob Dylan and Tom Waits and John Prine and Woody Guthrie and Stephen Foster and Pete Seeger, and when she sang Zoe Mulford's The President Sang Amazing Grace, I cried. Because, really, it seems like another life these days, doesn't it? I'd never heard Baez in real life, had sort of fallen in love with my first real love to her music and was amazed that while her voice had deepened, it was still strong if not capable of hitting the super high notes of old. To tell you the truth, I don't know if I ever really appreciated those super high notes, anyway. When she sang Diamonds and Rust, I was twenty years old again and all moony over anyone who had a love affair with Bob Dylan and wove that love and anguish and romance into such words. Oh, boy.

I took a Lyft home, and when I got into the car, my driver, Min, acted super flustered as he'd had a time getting through the after-concert crowds in the street. I reassured him that it was no big deal and then he asked me how to get out of the campus and then he asked me what kind of concert I'd been to. It was Joan Baez, I said. And he asked, Who's she? And I said, She's been around for a long time, was famous in the sixties and seventies as a protest singer. Min asked me to find a song of hers to play for him in the car, and while I tried to pull one up, he asked, So what kind of things did she protest? And I said, She protested against the war and for immigrants and everything when she was young and now she's pretty much doing the same thing because of Trump. Min said, Why does she protest Trump? I know it's not good to talk about politics, but I love Trump! I think he's doing a good job! And I stopped looking for a YouTube video for Min to hear and said I can't stand Trump. Min asked why? and I said because he's a piece of shit. Bless Min's heart. We talked a bit more. Min is Korean and lives in Koreatown. I learned that he loves Trump because he's sticking it to the Chinese. Min conceded that the POSPOTUS does say controversial things but insisted his attitude toward China made him a great president. I said anyone who is so deeply racist and misogynistic, as well as ill-tempered could never get my respect. Min asked What sort of racist things has he said? I told him a few things and then said Honestly, Min, do you think he cares that you're Korean? He probably despises you for being Korean. Min clung to the anti-Chinese stuff and I sat pissed in the back seat because that light emanating from Joan Baez was leaking out of the car. I thought about jumping out at a light and then thought better of it. Min had on a large checked button-down shirt, just the kind I dislike, and I didn't know what to make of him, to tell you the truth. When I got home, I told Oliver and Carl about him. Carl rolled his eyes and Oliver said, Min sounds like a dumbass.








Oh, what'll you do now, my blue-eyed son?
Oh, what'll you do now, my darling young one?
I'm a-goin' back out 'fore the rain starts a-fallin'
I'll walk to the depths of the deepest black forest
Where the people are many and their hands are all empty
Where the pellets of poison are flooding their waters
Where the home in the valley meets the damp dirty prison
Where the executioner's face is always well-hidden
Where hunger is ugly, where souls are forgotten
Where black is the color, where none is the number
And I'll tell it and think it and speak it and breathe it
And reflect it from the mountain so all souls can see it
Then I'll stand on the ocean until I start sinkin'
But I'll know my song well before I start singin'
And it's a hard, it's a hard, it's a hard, it's a hard
It's a hard rain's a-gonna fall

Cannabis and Pediatric Neurology: A Modern Day Fairy Tale with a Villain

Sophie and Me
La Jolla, CA 1999

Sophie was about four years old in that picture. I was 35, and it was the turn of the century and the millennium.

Once upon a time.

I sure wish that I could have had access to CBD oil back then.

I might have avoided nearly twenty years of frustration in controlling Sophie's seizures. She might have never become addicted to the benzo. We might not have had to try fifteen more drugs (she'd already been on eight in this picture). We might have avoided the second trial of the ketogenic diet which reduced Sophie to a pacing tiger in a cage waiting for her slice of strawberry embedded in a stick of butter, her stool impacted and no seizure relief, myself a fucked-up wreck of a woman. We might have avoided a broken leg, a broken nose, a broken hand, a split-open forehead and back of head, more than twenty stitches, permanent teeth knocked out, and a host of side effects: screaming, rigidity, sleeplessness, catatonia, anorexia, stomach pain, headache, fevers, rashes, hives, irritability, ataxia, dizziness, muscle weakness, blurry vision and cognitive decline.

Tonight I learned that another family has been threatened by a pediatric neurologist at UCLA. I'm not going to use his name, but I've written about him on this blog. I've also written quite recently about my own encounter with a bully -- Sophie's adult neurologist and her superiors who refused to discuss medical cannabis with us, even after we had been doing so for nearly five years. The irony of the recent scandal going on in the USC medical school is not lost on me. Look it up if you want to hear some serious shit.

But I digress.

This UCLA pediatric neurologist's  "area of expertise" is infantile spasms, the disorder that Sophie was diagnosed with in 1995. I will remind you that the treatment protocol for infantile spasms is nearly identical to the one we used twenty-two years ago with the exception of a "new" drug that is not new. It was approved by the FDA years after we used it. We tried it back in the last century at the urging of our very cutting edge neurologist because Sophie had already failed eight or so drugs in various combinations. She was nine months old. We got it from England, and we gave it to Sophie along with two other drugs. It didn't work and caused what I thought was psychotic behavior in a baby. Screaming for most of the day and night. It had not been tested, you see, on babies, and who knew whether that particular cocktail of drugs was causing more harm?

This drug Vigabatrin went off the market for a time because it can, in rare instances, cause serious irreversible vision damage. When your doctor prescribes it for your child's infantile spasms or seizures, you have to sign a waiver that you know about this risk. The other standard treatment for infantile spasms is ACTH, a high dosage steroid, administered by intramuscular injection. I believe brain surgery as a treatment has advanced somewhat, but -- it's brain surgery, and you have to be a candidate for it. You have to have a focus area to mess with in the operating room. Sophie did not have a focus.

90% of babies diagnosed with infantile spasms will have moderate to severe cognitive disability and refractory seizures. This number has not improved in decades despite "advancements."

This pediatric neurologist at UCLA is one of the several neurologists in the city, in the country, who are involved in GW Pharmaceuticals' studies of cannabis medicine and their cannabis product Epidiolex.

This pediatric neurologist openly tells his patients about CBD oil and tells those of us in the "veterans" community that he supports its use, but then he threatens families with Child Protective Services.

He is a Janus-like figure, or perhaps that is too kind.

He is two-faced.

We can only surmise that he and others like him want people to stop using what Big Pharma calls "artisanal oils" and start using Epidiolex. We can only surmise that they are  -- let's say -- "on the dole" with GW Pharmaceuticals.

Follow the money, as they say. Except that these are not crumbs laid to remember your way to safety.

I will say that he is a bully. I will say that there a lot of bullies in the neurology world -- both pediatric and adult. I understand that there is a lot of fear. There is liability, lawyers, corporate policy. Medicine As Business.

I will say that we do not trust these neurologists.

I will say that there are pediatric and adult neurologists who are not bullies and who are willing to work with parent experts in a manner that is family-centered. I encourage you to leave your pediatric neurologist or adult neurologist if you are being bullied. I encourage you to advocate for full and open communication with your physicians and demand that they do the same. If they can't work with you, and you are using cannabis medicine, then they should tell you so directly and give you the choice to leave and find another neurologist. I realize that this might be impossible, so do what you need to do. You are in charge.

I don't know if there's a happy ending to this story, or if there's an ending at all. It seems, sometimes, as if we are always beginning.








Feel free to share this post with anyone that might find it helpful. I'm sorry that it pertains primarily to legal states and particularly California, but as long as we have docs averse to communication, we're going to see similar crap going down all over the country as the laws are eased.



Here are your rights and some resources:

Where to Find Pediatric Cannabis Support
Is Medical Marijuana Legal for Children in California
Patients' Guide to Medical Marijuana Law in California

The Tiny Little Mother Mind™ Reports

First of all, I'm going to ask you to view the following video, if you can.


https://www.facebook.com/DavidGeffenSchoolofMedicineUCLA/videos/1277904508994589/ 

If you can't see it, let me tell you what it's about.

Dr. Shaun Hussain, a pediatric epilepsy specialist at UCLA School of Medicine is a leading expert in the hard to control epilepsy syndromes category. That would include children who suffer from refractory seizures -- the seizures that medication does not help. Sophie was diagnosed with infantile spasms, one of the catastrophic epilepsies, when she was less than three months old. Dr. Hussain was probably in high school when I began injecting Sophie's thighs and arms with high-dosage intravenous steroids and then her first benzodiazepine which was, in the dark days of the waning twentieth century (1995), not approved for use in the United States. The drug was called nitrazepam, and it was given to me in a process called "compassionate protocol," a phrase that I can only throw my head back and laugh a long and bitter laugh over, today. 

Today. April 27th, 2017.

Today, when children are diagnosed with infantile spasms, they are still treated with much the same protocol, even though that protocol is not effective. Yes, new drugs have been developed and approved, imaging is more powerful and surgical intervention is more prevalent and sophisticated, but treatment is still not entirely effective, and a diagnosis of infantile spasms remains one of the most devastating pediatric epilepsies. Not a week goes by that I don't read about, receive an email from, a telephone call or a referral from someone whose child had infantile spasms, has infantile spasms or another epilepsy syndrome and who is struggling with constant seizures despite multiple drugs, often in combinations of three and four -- drugs with hideous side effects.

As most of you readers here know, over the next nineteen years after her diagnosis, Sophie was given twenty more drugs in various combinations, many of which were not approved for use in the United States, were only newly approved and little studied or not approved for use in children. I can honestly say that at a certain point, these drugs were prescribed in a way that I can only compare to a primitive crap shoot -- that the series of neurologists who prescribed them would often compare the situation to throwing darts, and that one or two of them openly admitted that they just didn't know how the drugs worked, why they didn't work and what to do, really, about Sophie. Sophie is not alone in this experience. Children like her are legion. When she was nineteen years old, I learned about The Realm of Caring* and the Stanley Brothers and put Sophie's name on a waiting list to try their high CBD oil. We began to give her cannabis oil called Charlotte's Web in late 2013, and her seizures stopped for the first time in her life for a period of weeks. In the nearly four years since, we have weaned her completely from one drug and are slowly weaning her from the benzodiazepine clobazam (Onfi) that she's been on for nine years, a drug so vicious that we might never be able to get her off of it, such is her dependency and the damage it's wrought on her brain. While she is not seizure-free, and there have been periods of great struggle, we achieve long periods of seizure freedom through careful tinkering with dosages and strains, the addition of THC and careful monitoring. Her quality of life -- and our family's -- is vastly better.

But this isn't about me.

The video. 

Dr. Shaun Hussain is leading the cannabidiol studies at UCLA and thus has ties to two pharmaceutical companies, namely GW Pharmaceuticals and Insys. Feel free to read up about both companies and what they're doing. The title of this Washington Post report should give you a taste: A Pharma Company that spent $500,000 trying to keep pot illegal just got DEA approval for synthetic marijuana.

In the video, Dr. Hussain makes some startling and very disingenuous remarks about cannabis medicine, including the horrendous last case history. It is literally rife with inaccuracies and bombast -- stuff that I won't deign to go over.  I participated in a panel "discussion" (quotes are because there was no discussion as the Powers That Be literally shut down we uppity folks with the tiny little mother minds™) with Dr. Hussain several years ago at a Brain Summit put on by the Epilepsy Foundation of Greater Los Angeles. The panel "discussion" was about cannabis medicine, and I spoke from a parent perspective. I wrote about it here as it was the proverbial straw that broke this camel's back as far as my trust and respect for the neurology world in general and the party line about cannabis in particular. It was insulting, demeaning and patronizing, and it continued even afterward in a series of emails with Dr. Hussain. 

 Toward the end of his presentation on the video, he advises the doctors in the audience that it would behoove them to report those parents who are using cannabis medicine with their children to Children's Protective Services. 

That might be the second straw that drives the broken-backed camel into the sand.

Here's my comment to the post and video on Facebook:

This video will probably be taken down, but before it is, take a look and a listen. These are the people -- DOCTORS -- with whom we must work as we navigate the medical cannabis world. Here's my comment, in case, it's taken down as well:

After parenting a daughter with a severe and uncontrolled seizure disorder for over two decades, I can't say I'm surprised, but I am appalled at the outright disingenuousness of Dr. Hussain's presentation here. The pretension, the condescension and outright ignorance don't enrage me as much as they confirm what I've learned as well about the neurology profession in general but specifically this subject. The laughter in the audience confirms, to me, that those in attendance, including the presenter, are nothing more than shills for the pharmaceutical industry. To speak of and warn doctors of their duties as "mandated reporters" is unethical and profoundly disturbing. I know for a fact that these same doctors are actively nodding their heads as parents navigate the cannabis world. You HAVE violated your Hippocratic Oath, quite effectively and systematically, over and over. I imagine this video wasn't intended for public viewing and that it will be removed, but there are many of us out here who will have seen it, transcribed it or will have heard of it. It doesn't surprise us, but it will further disintegrate the relationship between doctor and patient and foster increased mistrust toward those who are supposed to be serving us. Yours is a profession that will prescribe a powerful benzodiazepine to an infant, or any number of powerful drugs not studied in children yet remain obdurate about a treatment and a medicine for which there is reams of data and information. Shame on you.




*Realm of Caring is a non-profit foundation. The Stanley Brothers make Charlotte's Web. There are several other manufacturers of cannabis oil  using different strains of marijuana. Dr. Hussain, while joking about the good-looking brothers, neglects to differentiate between the two.

Side of the Road

The Husband and I went to hear Lucinda Williams last night at Royce Hall on the UCLA campus. Her craggy, strong voice sounded exactly the same as it had years before, and we were both stunned and thrilled when she opened with Side of the Road, a more obscure one that happens to be our favorite. We had just wondered what she might sing when she walkd out and began singing it. Afterward, The Husband said I could really just leave now.







You wait in the car on the side of the road
Lemme go and stand awhile, I wanna know you're there but I wanna be alone
If only for a minute or two
I wanna see what it feels like to be without you
I wanna know the touch of my own skin
Against the sun, against the wind

I walked out in a field, the grass was high, it brushed against my legs
I just stood and looked out at the open space and a farmhouse out a ways
And I wondered about the people who lived in it
And I wondered if they were happy and content
Were there children and a man and a wife?
Did she love him and take her hair down at night?

If I stray away too far from you, don't go and try to find me
It doesn't mean I don't love you, it doesn't mean I won't come back and
stay beside you
It only means I need a little time
To follow that unbroken line
To a place where the wild things grow
To a place where I used to always go

La la la, la la la, la la la, la la la
La la la la, la la la, la la la, la la la
If only for a minute or two
I wanna see what it feels like to be without you
I wanna know the touch of my own skin
Against the sun, against the wind

David Sedaris

Last night, I had the pleasure of once again hearing David Sedaris at Royce Hall on the UCLA campus, an event that I've looked forward to every year for the past five years. I buy a series ticket to the Writer's Word (many of which I've posted about here), and the series culminates in a raucous finale by Sedaris.

When I was a kid I loved the joke:

What goes HA, HA PLOP?


I'll leave the answer at the bottom.

David Sedaris tells his hilarious stories, reads from his travel diaries and tells sometimes disgusting jokes while nearly two thousand people rock the house with laughter. I literally have to bend over in my seat sometimes to catch my breath. If you've never read his work, please do. Especially if you're like me -- beset with near-constant situational anxiety and a tendency to forget that the world is something other than tribulation! The best thing about Sedaris is his brilliant ability to weave a biting, bitter humor with sweetness -- after listening to him talk of his beloved parents, sisters and brother and partner Hugh, I always feel more tolerant toward my own family and all of our complexities -- there's something so powerful about recognizing human frailty and laughing at it --

Answer to riddle:


A man laughing his head off. It still makes me giggle. :)

Another Great Night in Los Angeles

I've written before about the writer's word series that I indulge in every year. I buy one ticket -- it's my season ticket -- and I sit on the third row, right in the center and look right up into the eyes of some of my favorite writers and poets.

Tonight, after a frustrating day that I'll write about some other time, I was transformed by Maya Angelou. This ticket was originally for February, but the date was changed when Ms. Angelou was awarded the Presidential Medal of Freedom by Obama. When the curtain went up on the stage, she was revealed, dressed in a long black jersey dress and strands of gold chains. She stood for a moment as the sold-out crowd at Royce Hall at UCLA clapped and cheered wildly, and then as we quietened, she sat down and began to sing -- sing the words from one of her poems in a deep, rich, almost manly voice. She sang what I can only describe as the refrain of  Our Grandmothers: I shall not be moved. 

It was outrageous.

She lay, skin down in the moist dirt,
the canebrake rustling
with the whispers of leaves, and
loud longing of hounds and
the ransack of hunters crackling the near
branches.


She muttered, lifting her head a nod toward
freedom,
I shall not, I shall not be moved.


She sat in a wing chair on the stage the entire time, next to a little table that held a vase of pink snapdragons and white calla lilies, a beautiful wooden box with a shiny, gold clasp, and a hard-backed copy of one of her collections of poetry. She told many stories in her deep rich voice and recited many poems, some her own and some of those she loves best (Paul Dunbar, Nikki Giovanni, Mary Evans, Edna St. Vincent Millay, William Shakespeare).  She spoke about her own history, weaving her birth, her parents abandonment of her and her brother, her ten years living with her beloved grandmother, her rape as a young child and all that followed. Always, she came back and sang the refrain: I shall not, I shall not be moved.


It made me shiver.


She gathered her babies,
their tears slick as oil on black faces,
their young eyes canvassing mornings of madness.
Momma, is Master going to sell you
from us tomorrow?
Yes.
Unless you keep walking more
and talking less.
Yes.
Unless the keeper of our lives
releases me from all commandments.
Yes.
And your lives,
never mine to live,
will be executed upon the killing floor of
innocents.
Unless you match my heart and words,
saying with me,
I shall not be moved.


She spoke of how she had been "paid for," how we have all been "paid for," by our ancestors, by those who came before us, by those who have helped us. She advised us to acknowledge that payment and to know that since we'd been paid for, we must be worth it. She advised us, too, to pay for others.

It was extraordinary.


In Virginia tobacco fields,
leaning into the curve
of Steinway
pianos, along Arkansas roads,
in the red hills of Georgia,
into the palms of her chained hands, she
cried against calamity,
You have tried to destroy me
and though I perish daily,
I shall not be moved.


She connected all peoples, of all races and cultures. She claimed to be black and white and gay and straight and male and female and beautiful and plain and fat and thin, and she laughed while she told us these things and we all laughed back and then stopped to hear her sing I shall not be moved.

Her universe, often
summarized into one black body
falling finally from the tree to her feet,
made her cry each time into a new voice.
All my past hastens to defeat,
and strangers claim the glory of my love,
Iniquity has bound me to his bed.

yet, I must not be moved.

She spoke of the necessity of poetry, in particular -- to go to, for laughter and for tears, for sustenance. She told many stories about poetry pulling people from despair.  She pulled her presidential medal of freedom out of the pretty little box and showed it to us, not bragging but exclaiming. I shall not be moved.

She heard the names,
swirling ribbons in the wind of history:
nigger, nigger bitch, heifer,
mammy, property, creature, ape, baboon,
whore, hot tail, thing, it.
She said, But my description cannot
fit your tongue, for
I have a certain way of being in this world,

and I shall not, I shall not be moved.

She cracked a number of hilarious jokes that I can't recall right now. I do remember, though, that while reciting a list of immigrants and their respective countries, those who had come to the shores of America over the years from all over the world, she said something about the Buddhas and the Pests. That was funny. She linked us all.

No angel stretched protecting wings
above the heads of her children,
fluttering and urging the winds of reason
into the confusions of their lives.
They sprouted like young weeds,
but she could not shield their growth
from the grinding blades of ignorance, nor
shape them into symbolic topiaries.
She sent them away,
underground, overland, in coaches and
shoeless.

When you learn, teach.
When you get, give.
As for me,

I shall not be moved.

I laughed a lot and cried a little. I was moved, powerfully. I never felt like a "white woman" listening to a "black poet." I felt connected to those around me by our collective held breath.

She stood in midocean, seeking dry land.
She searched God's face.
Assured,
she placed her fire of service
on the altar, and though
clothed in the finery of faith,
when she appeared at the temple door,
no sign welcomed
Black Grandmother, Enter here.

Into the crashing sound,
into wickedness, she cried,
No one, no, nor no one million
ones dare deny me God, I go forth
along, and stand as ten thousand.

The Divine upon my right
impels me to pull forever
at the latch on Freedom's gate.

The Holy Spirit upon my left leads my
feet without ceasing into the camp of the
righteous and into the tents of the free.

These momma faces, lemon-yellow, plum-
purple,
honey-brown, have grimaced and twisted
down a pyramid for years.
She is Sheba the Sojourner,
Harriet and Zora,
Mary Bethune and Angela,
Annie to Zenobia.

She stands
before the abortion clinic,
confounded by the lack of choices.
In the Welfare line,
reduced to the pity of handouts.
Ordained in the pulpit, shielded
by the mysteries.
In the operating room,
husbanding life.
In the choir loft,
holding God in her throat.
On lonely street corners,
hawking her body.
In the classroom, loving the
children to understanding.

Centered on the world's stage,
she sings to her loves and beloveds,
to her foes and detractors:
However I am perceived and deceived,
however my ignorance and conceits,
lay aside your fears that I will be undone,

for I shall not be moved.

When it was over she stood up and we stood up and we all sang together

for I shall not be moved. For I shall not be moved.

Like a tree.

For I shall not be moved.

**The poem quoted is Our Grandmothers. When I stood up after this brilliant performance, I was alone (the trouble with single tickets) and felt a bit lonely that I had no one to share that moment with. Thank you, because now I think I have shared it -- with you!