On Repeat

 

(I sat down and wrote
The best words I could write
Turn, turn, turn again
Explaining to the judge
I’d be there on Wednesday night
Turn, turn to the rain
And the wind)

Please come to my Substack to read the rest of this. Subscribe for free. 

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

You don't need a weatherman to see which way the wind blows

10.  Practice corporeal politics. Power wants your body softening in your chair and your emotions dissipating on the screen. Get outside. Put your body in unfamiliar places with unfamiliar people. Make new friends and march with them.

Timothy Snyder, Professor of History at Yale University, from On Tyranny: Twenty Lessons from the Twentieth Century 

Disabled activists put their bodies into the fight and were literally dragged from the arena and told to shut up by those who work for them. Others who work for them did nothing, and I imagine that is because they were disruptive, shrill, out of control. 

The activists were called a sideshow.

What have you done to help disabled persons and the families of medically complex children fight for proper healthcare for everyone?

We are doing this for you, too.

Yes, it's a drag to have to beg, to applaud even those who waffle around about doing the right thing, but we're the sort of people that know fatigue and disappointment in ways that you might not imagine. We're stronger for it.

Help.

Make calls.

Put your body -- your healthy body -- into it.

Be shrill.

Be disruptive.

See the way the wind blows.

Swimming to Shore

I lay on my bed for many hours yesterday. Flat on my back, staring at the ceiling when I wasn't playing Solitaire on my phone or carrying on on Facebook. I felt beyond drained. Spent. All used up. I felt filled with sorrow and sadness and loss and loneliness later that night. I thought about my friends who spend days and weeks and months in hospitals with their children. I remembered the many days I spent in hospitals during the early years of Sophie's life and don't remember how I did it. My body bears the memory in muscle and sinew, brain synapse. I think of Sophie's brain and kindling, the cascade of spark. I think of doctors in earnest boxes and those that believe so earnestly in them. Again, sorrow and sadness and loss and loneliness. I don't believe in the divine but am grateful for the divine comedy. Every thought spins another and the other is a gentle admonition that it's not that bad. There's perspective. There's Aleppo. There's my cousin in Mississippi who lost her beloved teenaged stepdaughter in a car accident on Tuesday morning. There's the very fact that I can lie on a bed for five hours staring at the ceiling, let sorrow and sadness and loss and loneliness wash over me, the bed a boat bobbing.











Bob Dylan won the Nobel Prize for Literature this morning, and I am glad. I'm glad because his poetry and song has shaped my adult life. Even as my mind doesn't understand, my body -- muscle and sinew, bone, mouth, tongue -- does, and I am alive. I got up and out of the boat and swam to shore.



Though you might hear laughing, spinning, swinging madly through the sun
It's not aimed at anyone
It's just escaping on the run
And but for the sky there are no fences facing
And if you hear vague traces of skipping reels of rhyme
To your tambourine in time
It's just a ragged clown behind
I wouldn't pay it any mind
It's just a shadow you're seeing that he's chasing


Then take me disappearin’ through the smoke rings of my mind
Down the foggy ruins of time, far past the frozen leaves
The haunted, frightened trees, out to the windy beach
Far from the twisted reach of crazy sorrow
Yes, to dance beneath the diamond sky with one hand waving free
Silhouetted by the sea, circled by the circus sands
With all memory and fate driven deep beneath the waves
Let me forget about today until tomorrow

What I Love

1. When Bob Dylan plays the harmonica, especially on the album Blood on the Tracks, particularly the end of the song You're a Big Girl Now
2. First two and last two lines of novels: "Yes, of course, if it's fine tomorrow," said Mrs. Ramsay. "But you'll have to be up with the lark," she added. / It was done; it was finished. Yes, she thought, laying down her brush in extreme fatigue, I have had my vision.
3. Cheese, baguette, olives, dark chocolate
4. The taste of bourbon the heat as it goes down
5. Your dark eyes, full-on then closed, kissing them on tiptoe
6. Lying awake in bed in the morning, just after dawn
7. Banter
8. My neighbors, particularly those that share antipathy toward the McMansion developers and send me funny texts
9. The opening scene of Wim Wenders' Wings of Desire and Federico Fellini's La Dolce Vita
10. The perfection of both lyrics and melody of Joni Mitchell's Both Sides Now

Just like

This takes my breath away:

Love Me Anyways

Sidewalk graffiti, La Brea Blvd.

A girl I went to high school with in Atlanta had a thick brown braid, about two inches across, that she wore down her back. I always wanted a braid like it and have the thick hair but could never get it to grow that long. Or maybe it's that as it grows longer and longer, it feels like more of an encumbrance than a crown of glory. I cut my hair today from quite a bit past my shoulders to just above. It was the longest I'd let my hair grow since the last millenium when married to my college sweetheart and living in Nashville, Tennessee after which (both the marriage and the city) I wore it the shortest I'd ever dared and moved to New York City. While I enjoyed the don't give a flying foo-foo about how I look mentality it took in this millenium to let it get as long as it did until this morning, I felt increasingly -- let's say -- haggard. How much can I possibly write about my hair without resorting to tired cliches about age and sexuality and what the hell has happened to me and where are you tonight, sweet Marie?  The tiny, wonderful hairdresser used a flat iron and a blowdryer on it, so I look a tad Barbra Streisandish (and not in a good way), but overall, it feels good. I think when I let it dry naturally (as I don't own a flat iron or blowdryer and plan on never doing so), I might hitch a ride in a convertible Mercedes like the one the girl with the brown braid drove in Atlanta and take off for my next destination.

Well, anybody can be just like me, obviously
But then, now again, not too many can be like you, fortunately.

Intimidating Words, Part Three

My friend Allison and I, melding our tiny little mother minds™.

People are crazy and times are strange

I’m locked in tight, I’m out of range

I used to care, but things have changed

Bob Dylan

You know my history with intimidating words. If you don't, please catch up by reading Part One and Part Two.

Today's lesson will be about the word Hegemony. Your instructor, though, will be my friend Allison, and your assignment is to read her blog post today. Here's the link:

Exploring Hegemony with a Tiny Little Mother Mind™

Now click on the Bob Dylan link below and try to listen to the words as you read the rest of this post.

I know that's a lot of links, but as I did all the little cut and paste things, I thought to myself how supremely grateful I am for technology. I read a lot of yada yada about how disconnected we all are, how stupid our children are becoming, how hideous and depressing technology is, and it just makes me yawn. I think about the hours I spent alone in my apartment in New York City back in 1995 with my screaming, seizing baby and one paperback book titled Seizures and Epilepsy in Childhood, a book that had approximately three or four sentences devoted to Sophie's diagnosis. Those sentences declared a very, very bleak outlook for babies like Sophie, and while I clung to the hope then that she would be in the tiny percentage of children who would go on to "do well," I had absolutely no one with whom I could --- well --- meld my tiny little mother mind.™ 

Let me tell you something. The treatment for infantile spasms -- the disease that I looked up in that paperback book twenty years ago -- is almost exactly the same today as it was then. The first-line treatment is ACTH, a steroid injected intra-muscularly twice a day that wreaks havoc on the immune system, and in our case, caused Sophie to scream 22 out of 24 hours and to develop such a bad case of thrush (yeast growth all over and inside her mouth and genitals) that we had to discontinue it. Oh, and it didn't stop her seizures, so we began adding drugs (8 of them, before she was a year old). I assume the side effects of ACTH are the same now as they were then and understand that one tiny vial of the shit costs upwards of $28,000. In addition to steroids, babies diagnosed with infantile spasms are also now prescribed Vigabatrin, a drug that we tried back in the dark ages of the last millenium when it was non-FDA approved. Currently, if you embark on the Vigabatrin path at any point in your child's seizure career, you are given some forms to sign that you understand the drug can cause blindness.  Finally, if your baby is diagnosed with infantile spasms today, in this millenium, you might very possibly be eligible for The Knife. That's it. Twenty years and oodles of technology, yet THAT IS IT.  

Don't get me wrong. I'm not blaming doctors or science or dedicated researchers. This is excruciating and deeply mysterious stuff. However, writing letters like the head of the American Epilepsy Society recently did to a United States Senator from Pennsylvania, a tersely worded letter* expressing The Party Line about cannabis and its disapproval is, at best, unethical. At worst, it makes me despair and see not stars but a giant, groaning black hole. 

I waited nineteen years watching my daughter seize uncontrollably on over twenty drugs. I watched her development plateau and then stall, spent thousands of hours negotiating with insurance companies to pay for treatments and borrowed tens of thousands of dollars to not only treat those seizures but to pay for childcare as my child grew yet never learned to speak, to use the toilet, to walk unassisted, to eat by herself or to sleep by herself, and fought year in and year out for that child's rights and integrity in literally every single system afforded to citizens of the United States. I won't talk about my sons here, Sophie's father, the marriage, the juggling, the whole catastrophe. Always, the seizures.

Then we tried cannabis, and you know the rest of the story.

Good lord, I've gone on a rant, haven't I? This was about cultural hegemony, a word that still intimidates me. I think I might understand it intuitively, though, and it's somehow sung right here, in these words.

*Email me if you want a PDF of the letter. I can't figure out how to attach a PDF to Blogger. Have a giant swig of vodka or mainline some heroin before you read the letter, though, because it's depressing as hell in its obeisance to Big Pharma -- 

Post Lament and Citrus Zest

Really. I just couldn't resist. For the record, I've uninstalled (is that the word?) Facebook from my phone and have pledged to only visit there once or twice a day. I've also sworn off the news, so unless Bob Dylan or someone like him dies, I don't want to hear about it. I went on a long walk with a friend this morning for the first time in -- well, let's just say that it's been too long, and as my friend says, I've got a situation going that's not getting any better. On the way to her house, I walked past a single heart monitor thingy lying in the grass and took it as a sort of omen that I need to get on the stick and exercise more regularly before the situation gets out of hand. Yesterday's lament and its residual anxiety hangover disappeared somewhere along the route we took and truly went up in a puff of salt, crushed pepperoncini and citrus zest that covered the thin slices of avocado that lay on the toasted baguette that I ate at a restaurant along our walking route. Back at my house and outside my bedroom, despite the constant whine of big box mega-mansion construction and a steady stream of male Spanish talk and music, the lemon and orange trees are blooming and literally assailing me with their sweetness. I wish I could box it up and send it to someone in Maine (Christy?) or Boston (Single Dad? Claire?) or New York (Sandra?).

Reader, what's happening with you?

Idle Thoughts, Not Idyll

What I'm thinking about:

Well, mainly my own obstreperousness and reactivity to the patriarchy.

I keep thinking of all the discussion about the events in Ferguson and all the pressure for balance and civility. Sometimes, obstreperous and reactive, I think staying composed is a whole lot of bullshit.

I'm not thinking about reacting -- except in my mind.

When I see a woman with her head and face veiled walking behind a guy in khakis and a sweater, I want to rip it off her with a flourish, then rip my own shirt open and flaunt my breasts to her man. Actually, maybe he's not her man, but she's definitely his woman.

Again, this is in my mind.

To be fair, I'd do the same to the woman in the wig, wheeling and walking her five or six small children down the street.

Give me liberty or give me death?

I'm not ashamed to say that American history has never moved me in the way it's supposed to.

I wish I were smart enough to understand Noam Chomsky. Reading his words is like entertaining fish in my brain. They flit by with fantastic ease, but they're slippery. I just can't catch one before it disappears into murk.

I'm thinking about what kind of world it'd be if Officer Wilson were more like Barney Fife, let's say, yelled out the window at the two teenagers walking in the street, on their way to dinner at Aunt Bea's and shouted, Ya'll get on the sidewalks, boys!, and drove on.

I'm thinking about all the ruckus in the middle east, how it just goes on and on and on and there are some people who are evidently not tired of it. 

I'm thinking about the death penalty, the Texas machine that would kill a mentally ill man who wore a cowboy hat with bling to his own trial. Evidently, there's a stay on his impending execution, and we're all supposed to feel relieved. This needs to be debated and figured out?

I'm thinking about that hallowed thing -- The C O N S T I T U T I O N and how I'm sick of those who say it's something akin to The Ten Commandments, but don't pay any attention to something like the Eighth Amendment.

I read that when you're dead, you don't know that you're dead. The people left behind have a difficult time. It's the same when you're stupid.


To live outside the law you must be honest, said Bob Dylan.

Raging Against the Machine in Little Tokyo with Howard Zinn's American Voices

The evening began in Little Tokyo, downtown, where Oliver and I went and slurped noodles. He had some sort of beef bowl, and I had seared tuna with a spicy wasabi dressing. Afterward, we walked over to the Aratani Theater, a small but classy joint where I've seen Toni Morrison and other literati. Some of you might remember that as part of our homeschool curriculum, Oliver and I are making our way through the young people's version of the great radical Howard Zinn's controversial People's History.  In a nutshell, Zinn writes American history from the point of view of the exploited as opposed to the "great" leaders, statesmen and warriors. The book has been suppressed over the years, bemoaned by the religious and patriotic right, but Oliver and I are finding it compelling reading, as well as overwhelming and sobering. Tonight's show had actors reading original texts of some of these people in American history -- familiar names like Sojourner Truth and Harriet Tubman, Malcolm X and Naomi Klein, and then ones less so like poet Marge Piercy, union activists and labor leaders.

An 1880 speech by the women's suffragette and populist Mary Elizabeth Lease who cried out against the excesses of Wall Street was weirdly prescient and brought down the house. The folk musician Joe Henry sang a Bob Dylan tune, and Tom Morello of Rage Against the Machine sang Springsteen's Ghost of Tom Joad. Can I just tell you that while I recognized the name Rage Against the Machine, I didn't know Tom Morello from Mr. Morell, my eighth grade English teacher? Ya'll, I'm a believer after hearing this guy's voice and guitar-playing and just overall -- well -- passion. I might have even jumped up and down at the end during a rousing rendition of This Land is My Land when he told us to do so.

Oliver, who earlier expressed his reluctance to sit through all of these performances was completely jacked up when John Kresinski of The Office walked onstage, and don't tell him I told you, but I think he was smitten by Kerry Washington. Aside from feeling energized by the wisdom and spirit of these voices of our distant and near past, I left, too, feeling sober and not a little depressed at how little has changed, how we seem to be moving backward, again, in this country, involved in endless wars, rallying to deport and demonize the immigrants who do the bulk of work, taking away women's reproductive freedom, shooting men of color or throwing them in jail and allowing those who brought the country to its economic knees to walk free, their pockets newly padded, buying elections and driving an ever greater wedge between those who have and those who have not. For a few glorious hours tonight, though, I looked around and saw people of every age, shape and color, and the sight of my boy's smiling face and shining eyes made me feel a tiny bit hopeful.

I don't have a title for this post

If you'll forgive the possibly distasteful metaphor, I feel as if I'm in an iron lung. I need air and movement. The interminable construction site that is my street and the surrounding area fills the air with whine and hum and hammering -- perhaps also a metaphor for my own complaining, So here's some gratitude: the only part of my garden that isn't dead and brown is the path leading to the side yard where we keep the garbage cans, and that little sliver is just gorgeous. Here's a photo, no filter:

Here's a close-up of the purple flowers on the left:

And that's bougainvillea that is squeezing through on the upper right -- no one planted it, but it's determined to flower there. I noticed yesterday as I drove through Beverly Hills that they'd finally stopped watering the median on Burton Way. It's a wide expanse of green flanked by some ultra fancy hotels and shops, and I always found it irritating to see sun-illuminated sprinklers watering at any time of the day. I guess the fancy folk have decided to join the hoi polloi and endure dead grass in the name of conservation. Hallelujah. I sure wish it'd rain. I wonder when the rain dances begin -- didn't Governor Rick Perry of Texas declare a state-wide Pray for Rain day? I'm in if it works, although I'd prefer some kind of dance, too.

What are you reading? I'm reading a very interesting and good novel by the English author Elizabeth Taylor. The book is called Angel, and is not just beautifully written but weird in just the right way. One of the friends I visited in Chicago the other weekend, probably one of the most well-read people I know, recommended it. I hadn't ever heard of that Elizabeth Taylor, and while this friend doesn't know me all that well, he apparently knows me well enough to have suggested something that I really, really like.

Evidently, I need air, movement and inspiration because this post is going nowhere. The only thing I can possibly say for it is that life here at a moon, worn as if it had been a shell is an ongoing conversation. I'd love to hear your thoughts. What are you reading? What are you listening to? Is it raining where you live? Every time you hear the word ISIS, do you think of on the fifth day of May, like I do?

What We Make

photographer: Alain Delorme

I was thinking about diamonds and the world's biggest necklace. 

Bob Dylan

I was thinking about how so much of our life consists of stories that we make up, word by word, sentence by sentence, paragraph by paragraph, page by page. Days and then years go by in the telling. At worst, we lie to ourselves through story, believing it. At best, we are wildly creative in our elaboration.

I was thinking about how so much of life itself is a house of cards -- at least the life of humans -- everything stacked precariously, both ill- and well-intentioned, with nothing, really, at the base. If I cast my mind back to the days when I worked for a retail brokerage firm in Nashville, Tennessee, I felt that house of cards tremble when the stock market crashed in 1987, the grim faces of my work colleagues, the quiet and stifled panic. I looked across the huge room where we all sat behind glass walls that ringed the perimeter, can see as if it were yesterday, the face of a young man whose name I've long since forgotten, his bowed head in his hands. Marriage is a house of cards whose base is sometimes nothing more than a piece of paper. Men who love men and women who love women have added their own cards, and every time a card is added, the whole pile seems about to collapse. Dissolution is another card. The fragility of it all makes me tremble.

I was thinking about the Ebola epidemic in Africa, how the crazies are already blaming Obama for letting it in. I'm not sure why some things induce such panic (Ebola) and other things are pushed aside, even denied (climate change). 

I was thinking of how we make up stories, card by card, and fuel our illusions.

Shelter from the Storm

This currently is keeping me going:

My New Anonymous Comment Policy***

Be groovy or leave, man.

Bob Dylan

***Some of you comment anonymously for really good reasons, and that's fine. Or should I say groovy. Some of you comment anonymously and leave your names in the content of the comment. That's even groovier. It's easier to talk to people who name themselves. Some of you comment anonymously and completely disagree or dislike something that I've written. That's groovy. Some of you comment anonymously and completely disagree or dislike something that I've written, believe you know me and leave very personal, critical remarks about me or my family. That's not groovy. Leave, man.

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.

My Favorite Bob Dylan Song and a Photo of The Brothers

Love Minus Zero, No Limit

My love she speaks like silence
Without ideals or violence
She doesn’t have to say she’s faithful
Yet she’s true, like ice, like fire
People carry roses
Make promises by the hours
My love she laughs like the flowers
Valentines can’t buy her

In the dime stores and bus stations
People talk of situations
Read books, repeat quotations
Draw conclusions on the wall
Some speak of the future
My love she speaks softly
She knows there’s no success like failure
And that failure’s no success at all

The cloak and dagger dangles
Madams light the candles
In ceremonies of the horsemen
Even the pawn must hold a grudge
Statues made of matchsticks
Crumble into one another
My love winks, she does not bother
She knows too much to argue or to judge

The bridge at midnight trembles
The country doctor rambles
Bankers’ nieces seek perfection
Expecting all the gifts that wise men bring
The wind howls like a hammer
The night blows cold and rainy
My love she’s like some raven
At my window with a broken wing

Read more: http://www.bobdylan.com

Oxygen Rainbows

A rainbow line of oxygen tanks pulls up right alongside me on the highway, dragon clouds and blue skies above. I've only known careless love, sang the bard, a wheedle through my head. Oliver sat beside me, shot the photo and looked straight forward.  I tend to slip in the shocker when you least expect it. When somethin's not right, it's wrong. I pulled him out of school last week, quietly. I'm de-schooling for now and homeschooling for later. The road is wide and the sky is wide. It's all going to be ok.

There is Nothing, Absolutely Nothing, New Under the Sun: Vaccinations and Love Minus Zero

I'm re-posting something I wrote several years ago, as a rejoinder -- in part -- to another round of parents "taking a stand" and coming down on those who choose not to vaccinate their children. However reasoned, the argument is always the same, the simplification grotesque, the tempers flare, implications of immorality abound, there is nothing new under the sun.

I told a friend the other day, that I'm like a fly drawn to shit whenever this issue comes up, that I know better than to enter the fray because it makes me physically nauseous (and I am a woman with an iron stomach, have only thrown up about five times in my life). I typed out my spiel on a Facebook post, decrying the simplification of this issue, was promptly mollified, assured that "children like Sophie should be protected by the rest of us getting vaccinated," the whole herd mentality drone, that's not it at all, not at all, I thought. I went silent.

I told my friend that the O of Sophie's little mouth that embedded itself into my consciousness immediately after her initial vaccines is the O of the nightmare, of the Munchian shriek, of the aversion to all those who profess certainty and loyalty to Science with a capital S. 

Reason left through that O, on the rigid back of Science and Industry, coupled, obscene.

I am reminded, again, of how Science with a capital S has been wrong, so wrong about -- dare I say it -- marijuana?

Their statues are made of matchsticks, as the bard would say, crumbling into one another. Love minus O.

Wednesday, April 28, 2010

Vaccines -- A Very Important Post

Last night, PBS' Frontline aired what was touted as an unbiased look at "The Vaccine Wars" and which I refused to watch because the debate makes me physically ill. About one week before Sophie began seizing as a baby, she received her first five infant vaccines. In 1995, the DPT shot still contained the live pertussis virus, and Sophie had a fever and high-pitched screaming soon after. She was diagnosed with infantile spasms, a particularly devastating seizure disorder and so began our odyssey. While we never made a "case" for it, we have always suspected that those vaccines were, if not the cause, then a catalyst for Sophie's seizure disorder and since then have learned that a genetic predisposition to negative reactions from vaccines is a possibility (I, too, had negative reactions to vaccines in 1963, something I only discovered a few years ago when I took a look at my vaccine records that were all marked up in red). In any case, enough is unclear that we chose NOT to vaccinate the boys and while this was a difficult decision to make, it is not something that we regret.

The vaccine debate rages on and on and the voices are always loud and biased. When I've entered the fray, I have done so at my own personal peril, because like I said, it makes me almost physically ill. I maintain that the issue is complex and that the media and parents often boil it down to a ridiculous simplicity, vilifying the other side with regularity.  I am pasting an email that I received today from our long-time pediatrician, Dr. Jay Gordon, who has responded to the Frontline special with great integrity:

From Jay Gordon, MD, FAAP

Shame on PBS Frontline Show "The Vaccine War"                                                                                                                  April 28, 2010

Last night, PBS aired a show called "The Vaccine War." I was interviewed at great length and in great depth about vaccines and my point of view and expressed my ambivalence about the polarization of this issue and the need for more calm reasoned discussion about the number one question that new parents have. I told Kate McMahon, the co-producer of the show, that there was a large group of doctors and others who cannot be dismissed with the facile label "anti-vaccine" because we still give vaccines and see a place for them in the practice of medicine, but we do not agree with the current vaccine schedule nor the number of vaccines children receive all at one time. A few days ago, Ms.McMahon emailed me to tell me that the decision had been made to omit my interview from the show. There would not be one word from me. She didn't tell me that she had also omitted 100% of Dr. Robert Sears' interview. And that any other comments from physicians supporting the parents on the show in their ambivalence about vaccines or their decision to refuse all vaccines would also be omitted. She left this as a show with many doctors commenting very negatively, very frighteningly and often disdainfully and dismissively about vaccine "hesitation" as they called it. Below is my email response to Kate McMahon. Dear Kate, The "Frontline" show was disgraceful. You didn't even have the courtesy to put my interview or any part of the two hours we spent taping on your web site. You created a pseudo-documentary with a preconceived set of conclusions: "Irresponsible moms against science" was an easy takeaway from the show. Did you happen to notice that Vanessa, the child critically ill with pertussis, was not intubated nor on a respirator in the ER? She had nasal "prongs" delivering oxygen. I'm sorry for her parents' anxiety and very happy that she was cured of pertussis. But to use anecdotal reports like this as science is irresponsible and merely served the needs of the doctor you wanted to feature. No one pursued Dr. Offit's response about becoming rich from the vaccine he invented. He was allowed to slide right by that question without any follow up. Dr. Paul Offit did not go into vaccine research to get rich. He is a scientist motivated by his desire to help children. But his profiting tens of millions of dollars from the creation of this vaccine and the pursuit of sales of this and other vaccines is definitely not what he says it is. His many millions "don't matter" he says. And you let it go. Jenny McCarthy resumed being a "former Playboy" person and was not acknowledged as a successful author, actress and mother exploring every possible avenue to treating her own son and the children of tens of thousands of other families. I trusted you by giving you two or three hours of my time for an interview and multiple background discussions. I expressed my heartfelt reservations about both vaccines and the polarizing of this issue into "pro-vaccine" and "anti-vaccine" camps. I told you that there was at least a third "camp." There are many doctors and even more parents who would like a more judicious approach to immunization. Give vaccines later, slower and with an individualized approach as we do in every other area of medicine. What did you create instead? "The Vaccine War." A war. Not a discussion or a disagreement over facts and opinions, but a war. This show was unintelligent, dangerous and completely lacking in the balance that you promised me--and your viewers--when you produced and advertised this piece of biased unscientific journalism. "Tabloid journalism" I believe is the epithet often used. Even a good tabloid journalist could see through the screed you've presented. You interviewed me, you spent hours with Dr. Robert Sears of the deservedly-illustrious Sears family and you spoke to other doctors who support parents in their desire to find out what went wrong and why it's going wrong and what we might do to prevent this true epidemic. Not a measles epidemic, not whooping cough. Autism. An epidemic caused by environmental triggers acting on genetic predisposition. The science is there and the evidence of harm is there. Proof will come over the next decade. TheNational Children's Study will, perhaps by accident, become a prospective look at many children with and without vaccines. But we don't have time to wait for the results of this twenty-one year research study: We know that certain pesticides cause cancer and we know that flame retardants in children's pajamas are dangerous. We are cleaning up our air and water slowly and parents know which paint to buy and which to leave on the shelves when they paint their babies' bedrooms. The information parents and doctors don't have is contained in the huge question mark about the number of vaccines, the way we vaccinate and the dramatic increase in autism, ADD/ADHD, childhood depression and more. We pretend to have proof of harm or proof of no harm when what we really have is a large series of very important unanswered questions. In case you were wondering, as I practice pediatrics every day of my career, I base nothingI do on Dr. Wakefield's research or on Jenny McCarthy's opinions. I respect what they both have done and respectfully disagree with them at times. I don't think that Dr. Wakefield's study proved anything except that we need to look harder at his hypothesis. I don't think that Jenny McCarthy has all the answers to treating or preventing autism, but there are tens of thousands of parents who have long needed her strong high-profile voice to draw attention to their families' needs: Most families with autism get inadequate reimbursement for their huge annual expenses and very little respect from the insurance industry, the government or the medical community. Jenny has demanded that a brighter light be shone on their circumstances, their frustration and their needs. I base everything I do on my reading of CDC and World Health Organization statistics about disease incidence in the United States and elsewhere. I base everything I do on having spent the past thirty years in pediatric practice watching tens of thousands of children get vaccines, not get vaccines and the differences I see. Vaccines change children. Most experts would argue that the changes are unequivocally good. My experience and three decades of observation and study tell me otherwise. Vaccines are neither all good--as this biased, miserable PBS treacle would have you believe--nor all bad as the strident anti-vaccine camp argues. You say the decisions to edit 100% of my interview from your show (and omit my comments from your website) "were purely based on what's best for the show, not personal or political, and the others who didn't make it came from both sides of the vaccine debate." You are not telling the truth. You had a point to prove and removed material from your show which made the narrative balanced. "Distraught, confused moms against important, well-spoken calm doctors" was your narrative with a deep sure voice to, literally, narrate the entire artifice. You should be ashamed of yourself, Kate. You knew what you put on the air was slanted and you cheated the viewers out of an opportunity for education and information. You cheated me out of hours of time, betrayed my trust and then you wasted an hour of PBS airtime. Shame on you. The way vaccines are manufactured and administered right now in 2010 makes vaccines and their ingredients part of the group of toxins which have led to a huge increase in childhood diseases including autism. Your show made parents' decisions harder and did nothing except regurgitate old news. Parents and children deserve far better from PBS. Jay Gordon, MD, FAAP

Oh, Canada

So, I received a hilarious email from a reader today that I won't share here, but suffice it to say that it gave me an enormous laugh, and in lieu of a good-bye post as I leave for Canada** later this afternoon, I'll leave you with this song of Joni Mitchell's. To N who sent me the email, Joni is one part of the Holy Trinity that includes Bob Dylan and Van Morrison:















**I am going on a one-week respite trip, awarded to me through a grant from the organization caregifted.org. I am beyond grateful.