Thursday, May 26, 2016

Threads, Bits and Pieces of Gratitude and Exercise

Santa Cruz, CA


I'm reading a children's book called Cloth Lullaby The Woven Life of Louise Bourgeois. I have a weakness for children's books, have quite a collection that I keep adding to, and this one complements a recent exhibit I saw downtown of Bourgeois' work. Really, it's so beautiful I could cry:

With the remaining fabric of her life, Louise wove together a cloth lullaby. She wove the river that raised her -- maternal pinks, blues in watery hues. She wove a mother sewing in the sun, a girl falling asleep beneath the stars and everything she'd ever loved.












Speaking of tears, last night I shed some. Unbloggable. Oliver came home late after a Dodgers game and brought in a package that had been left outside the house by the mailman. It was addressed to me in beautiful handwriting and wrapped in the prettiest paper, but I couldn't figure out who had sent it. Honestly, I was feeling not a little anxious and unsettled from the unbloggable, so when I opened the package up and found a pound of artisanal coffee, a mermaid sticker and a beautiful note written by a long-time reader of this blog, I really did start crying. I am moved to action and advocacy by your writing, she said. I won't "out" the kind and generous person who sent me this gift, but I am filled with gratitude for her and for this community and for -- let's face it -- the bountiful universe. As my friend Carrie says, There are no accidents.

Last weekend, I was in Santa Cruz with my dear friend Tanya Ward Goodman (whose book Leaving Tinkertown is a must read) and Kari O'Driscoll, whom some of you might know and all of you should know as the writer of The Writing Life. We rented a little house near the ocean and spent two and a half days walking, eating, writing and talking. Mostly writing. On one of our walks, Tanya and I discussed the tyranny of gratitude -- how there's a whole business dependent on the concept of gratitude and how it's unrealistic and often depressing to be or feel grateful. I compared it to the tyranny of exercise, but that's because I hate to do it and Tanya had pressured me to get out of bed, a place I vastly prefer, and go on these long walks along the coast. I think Tanya believes walking and writing go hand in hand, and given her output I guess I'm going to have to surrender to that tyranny. What did happen is that I began the reconfiguration of MGDB*, and I think I've finally found the key, the flow, the whole shebang.

I'm going to surrender to gratitude as well as exercise because it's filled me up to overflowing.













*MGDB stands for my goddamn book which I know is an ugly, ugly thing to say and hardly grateful, but it's good isn't it?

Wednesday, May 25, 2016

Moody Weather



Santa Cruz, California


At the intersection of Edgewood Place and La Brea I let my eyes drift closed even as Oliver's voice ran on, its cadence the cusp of boy and man. I could see the light still red the parking lights of the car ahead of me firm. I was in the left turn lane and if I'd gone straight when the light turned green I might have entered a certain street in Newport Rhode Island where I lived during the summer after my sophomore year in college. Through my half-closed eyes I saw the intersection and the used bookstore at the end of it where I bought a dog-eared copy of Crime and Punishment from a bearded man who told me your eyes are moon pools. That was the summer I rode like crazy in a borrowed car to Hartford and up an elevator to a room and a shower and a door that I opened to a boy I loved who told me later it was your hair, wet and that one phrase lasted or made it last, it seemed, for years. But I'm in an intersection in Los Angeles, my eyes closed my son's sing song, my eyes open and then closed then open and now it's green and even as I turn left and away it's almost like water is there instead of road, the moon pools into tides and I'm a mermaid, tail curved beneath another's dark arm.

Wednesday, May 18, 2016

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

Tuesday, May 17, 2016

Monday Morning Re-Post

Checking out life ahead


I'm working on going through my blog, picking out posts that I might re-work and include in MGDB.* I've got a lot of posts, most of which are throwaways. Some don't fit my book, but I like them for other reasons. I think I'll periodically post those from years ago -- give them some fresh air. See below.







*my goddamn book 







In other news, Henry won the MVP award last night for his school's first season of lacrosse. I am, naturally, very, very proud of him. Next thing you know, I'll be posting video segments of his highlight plays on Facebook. If I do, please come and shoot me.







Friday, October 18, 2013

On Being A, On Be Coming Crone


What I'm thinking about today is the onset of crone-dom and not in a jokey, silly sort of way, except that there are plenty of crones out there who will probably chuckle softly to themselves that I would deign to believe myself a crone at the tender age of fifty. I feel it approaching, though -- cronedom -- and I feel it as a lassitude and resignation, a comfortable giving-up and giving-in, a sardonic eye tilt and thinning lip, an exasperated descent into temporary insanity, a skill in holding ridiculous paradox, a desire to live and to be done with it, a quickening pulse, a pull between the legs, fullness drooping, a chopped off finger wag, abstraction made concrete.

Crone talk over tea (from left to right):

Watching a child seize, day after day after day after day for years on end imposes a sort of discipline. You can actually live like that.

I dare you, to do what I've done and feel any other way.

Barn's burnt down,
Now I can see the moon.

Red lips, black hair -- they disappeared, but I taste them both, dearie.

Saturday, May 14, 2016

The 4004th Post



I think today is International Astronomy Day or something, and yesterday I went downtown with three friends to visit the Mirrored Infinity Room at the Broad. You could go in, only two at a time, for only 45 seconds. Gazillions of lights hung over water like stars.You stood on a platform and looked at your reflection in the many mirrors. It was cool, but we agreed that the pictures were actually better than the experience. There just wasn't enough time to really feel the magic. When I walked out, I remarked that it was what I imagined death to be -- some kind of immediate and quick merging with the stars. At least that's what I hope it'll be.

So, this is my 4004th post. How weird is that? I wish I had someone who would go through all of them and pull out the significant ones, if any. I know the key to the organization of my book is somewhere in there, but the task seems formidable. Anyone?

Anyone?

Sophie continues to recover from her oral surgery on Tuesday. She had minimal swelling and no ice was used. I think it was the CBD. It's a powerful anti-inflammatory. I'm feeling a bit drained from the experience, but it's not about me, is it? Speaking of, I got a dress-down from someone on Facebook. I had objected to her use of the word "retarded" in her rant against Elizabeth Warren detractors. While I agreed with her rant, I was bummed that she'd used the word "retarded" and said so. She defended it. I wrote her a private message explaining why it's so awful. She wrote me back and was very angry with me. She said a lot of things that I've been thinking about, some true and others just plain vituperative.

These things drain me, too, but once you're drained you're empty and can find things to fill you back up.




I can't get this poem by W.S. Merwin out of my head today:

I Live Up Here

I live up here
And a little bit to the left
And I go down only
For the accidents and then
Never a moment too soon
Just the same it's a life it's plenty
The stairs the petals she loves me
Every time
Nothing has changed
Oh down there down there
Every time
The glass knights lie by their gloves of blood
In the pans of the scales the helmets
Brim over with water
It's perfectly fair
The pavements are dealt out the dice
Every moment arrive somewhere
You can hear the hearses getting lost in lungs
Their bells stalling
And then silence comes with the plate and I
Give what I can
Feeling It's worth it
For I see
What my votes the mice are accomplishing
And I know I'm free
This is how I live
Up here and simply
Others do otherwise
Maybe



I've read it about ten times today and gotten something new out of it each time. 

Disney Hall, seen from The Broad


I can't stop listening to this old song:








4,004 posts. 

Art, poetry, music. 

This is how I live. Up here and simply. Just give me one thing that I can hold onto. Others do otherwise maybe.

Friday, May 13, 2016

Confessional



I'm thinking the word ruminative this morning from pink sheets and angry words. How the tides come in and then go out. How fatigue shapes the mouth tilts the eyes weighs heavy. Someone is a curling wave and another is still murk. We're 90 percent water. Mea culpa. The confessional box. When I made my first confession, I bounced up and down on the kneepad, making the little light over the screen window flash on and off. It slid open, the priest's head a shadow. Wait a sec, hon, his mouth was murky. He slid the window back. Silence. Darkness. We're told to shoot for the moon because if we miss, we'll land among stars.

Thursday, May 12, 2016

Tuesday, May 10, 2016

Report from the Dentist: Is it Safe?*



So, I'm going to moderate my tiny little mother mind™ words of this morning -- or at least temper them -- by saying that the anesthesiologist with the famous physicist's name turned out to be a wonderful guy. Really wonderful. He was gentle and kind and told me I was a saint. I told him that I most assuredly was not a saint and that he didn't know me from Adam. It turns out that he has a sense of humor, too, because he looked at me and said, You're right. You're probably dark and evil on the inside. Those were probably the truest words ever said, but only ya'll know that. It turned out, too, that Sophie had no cavities but needed her impacted lower wisdom teeth removed, and when I say removed, I mean right then and there. I felt boxed in when the dentist came out to tell me. She's a surgeon, and she specializes in treating people with special needs so there was room in the box, but still. I basically hyperventilated in the waiting room over the next four hours, in between texting with a few good friends and reading about Melania Trump in The New Yorker. That made me stop hyperventilating and start praying to Jesus for our salvation. The anesthesiologist with the famous physicist's name walked me to my car when it was all over. He lifted Sophie out of the wheelchair and put her in the front seat of my car, fastened her seatbelt and then helped me to fold up the wheelchair and lift it into the back of the car. So except for the hourly wage, I have to eat my words.



Also, it's my youngest child's birthday today, and he's fifteen years old. I'll devote a whole post to Oliver tomorrow, if I make it through the night. We're having Vietnamese food for dinner and a peanut butter chocolate birthday cake for dessert.

All will be well. All will be well. All manner of thing shall be well.



















*Prize to the first person who knows what this line refers to!

Monday, May 9, 2016

Report from the Tiny Little Mother Mind™





I spent quite a bit of yesterday in my bed in my nightgown reading Hemingway's A Moveable Feast. I'm having another Books & Bakes salon at my house in early June, and that's what I assigned. I've never read the book and am completely and utterly smitten by it. I am an admirer of Hemingway but not a lover, so it's taken me by surprise. With the exception of my beloved A Farewell to Arms, I thought that I would perhaps live to the end of my days without re-reading anything else by him, and I certainly didn't expect to be gobsmacked by his nonfiction. But there I was, all day, picking it up, reading a few pages and then having to lay it down to savor. In between I watched a couple episodes of The Wire, my other new obsession.

Where was I? Isn't this supposed to be a Tiny Little Mother Mind™ report? Yes. Yes, it is. Somewhere in the middle of my relaxing day, my land line rang (who knew that we'd be typing and reading with such ease a phrase like my land line rang), and because the caller ID was the name of a famous physicist, perhaps the most famous physicist of all time, I picked it up and answered it. If you're like me, you rarely get a phone call on your land line, and if you do, it's inevitably someone masquerading as the FBI, threatening you with jail over nonpayment of back taxes or someone trying to convince you that solar panels on your peaked roof might possibly work, or even a representative from your prep school asking for your contribution to the year's $500 million capital campaign. It's rarely a person with the name of the most famous physicist in history, so I imagine you'd answer it as well. Hello? I said, and the physicist introduced himself as the anesthesiologist who would be working with Sophie on Tuesday morning at the dentist's office. He had some questions for me. Because I was subtly influenced by Hemingway, I thought There is no reason to trust that this is a physicist. He is a doctor. The weather is bad. I am lying in my nightgown on my bed. It is the middle of the day. It is Sunday. The doctor with the physicist's name proceeded to ask me a series of questions about Sophie that included what medications she was on and what, exactly, her issues were. I guess I should backtrack and tell you that Sophie has been getting so feisty at the dentist's office of late that it's nearly impossible to clean her teeth, much less get x-rays. In fact, she hasn't had x-rays in years, and who knows what's happening with her wisdom teeth? Hence, the scary procedure tomorrow morning. Think about us at 10:00 am when the physicist/anesthesiologist does his work.

But back to the tiny little mother mind™report. During the questioning, the doctor with the famous physicist's name learned that Sophie was taking Onfi, Vimpat and cannabis. Right, he said, you mean Marinol, don't you? I said, Um, no. Marinol is synthetic THC. Sophie is on a high cannabidiol product and THC oil at night. I quickly explained The History of Sophie's Seizures and Use of Cannabis. You know it, right? The doctor with the famous physicist's name did not respond in any way. He was, naturellement, not interested in hearing how cannabis has helped Sophie so dramatically. I say naturally, with a French sneer because it's been my experience that doctors are, actually, not interested.

Anyhoo.

I began to feel the encroachment of the tiny little mother mind™in the middle of the good doctor whose name is a famous physicist's explanation of what the effects of benzodiazepines are on the brain, particularly with the addition of anesthesia. He was quite thorough despite my periodic interjections that I'd been doing this thang called epilepsy for more than two decades. In other words, as my old friend Susan might have said to a very famous neurologist Tell me something I already don't f*^ing know. Reader, I refrained from speaking like that, but by the time he'd finished mansplaining, given that I was still in bed in my nightgown with Hemingway lying forlorn next to me, I looked like this:



Now, ya'll know what really sustains me is my dogged sense of humor, so I thought I'd tell the doctor whose name is a famous physicist's that given my tiny little mother mind™and his famous name, I felt super confident about my daughter being under his care. He did not laugh. Not even the tiniest laugh. I refrained from asking him whether he'd been the doctor who administered propophyl to Michael Jackson that time, but I did ask are you, like, The Famous Physicist's Physicist? and he replied, Yes, and I asked, Are you related? and he said yes, a distant trace but he had not one, not one tiny little trace of laughter in his voice so I knew he'd either been asked it too many times or was, perhaps, a doctor whose name is a famous physicist's without a sense of humor. He moved quickly into A Discussion of Reimbursement. I learned that he was paid on the day of service, although proper insurance papers would be given to me to fill out and mail in myself. What is your rate? I enquired in my bravest tiny little mother mind™ voice.

The doctor with the famous physicist's name said, $800 an hour, and I said okay, and at some point said good-bye and see you Tuesday morning. And then my tiny little mother mind™ told my mouth to let out a tiny little moan, even as I picked up the Hemingway and turned to the marked down page because I had to, I just had to reread this:

I closed up the story in the notebook and put it in my inside pocket and I asked the waiter for a dozen portugaises and a half-carafe of the dry white wine they had there. After writing a story I was always empty and both sad and happy, as though I had made love, and I was sure this was a very good story although I would not know truly how good until I read it over the next day.

Saturday, May 7, 2016

Cannabis Oil Questions Answered, No. 8

The early days, Sophie aged 5



Do you ever use straight THC as a rescue medication? Do you worry about her getting high?

Yes, I do. And no, I don't. In fact, just this morning I woke to the awful sound of Sophie seizing in her bed. The awful sound includes grunts and thrashing limbs, sometimes a scream. I dashed from my room to hers and was assailed, immediately, by the smell of seizure. A certain type of tonic-clonic seizure induces not just a pungent body odor but nearly slick-with-sweat palms and feet. I don't know what this is other than a response from the autonomic system, but it makes my heart sink because it often stays for days. I actually hate this state more than anything, other than the seizure itself. I have no idea why my reaction to it is so visceral, but I imagine it has to do with powerlessness. Sophie has been doing quite well with the new strain of cannabis. She's going many days and sometimes even more than a week with no big seizures. I also give her THC at night, but only a tiny amount. I'll leave a discussion of that for another post, but suffice it to say that THC is very necessary for most kids with seizures and is the reason why CBD-only laws are often counter-productive. Whole plant medicine, ya'll.

I've gotten off track, as usual.

The answer to the question is, again, YES. I give Sophie extra THC, straight, as a rescue medication and it works. This morning, after that first seizure she had another, and after that, when she was still in a post-ictal state which means there was a bit of jerking and weird posturing, I drew up a small amount of THC oil into a syringe, shot it into the side of her mouth and massaged her cheek. She had already stopped seizing, so I wasn't giving it to her in a status state, but do you know that the clamminess and body odor -- the things that would ordinarily persist for days after such a big seizure -- disappeared? Her palms were dry, no body odor and everything hunky-dory. No more seizures, either.

Put that in your pipe and smoke it.

As for worrying about her getting high, cue the Mrs. Braddock laugh.



















*My cousin Maria sent me the photo above along with the ones below. There's something so sweet and nostalgic about them. I hardly remember those days, but then -- I do.

Henry, 22 months old

Me and Henry, aged 22 months and my father's foot

Thursday, May 5, 2016

Boxes O'Onfi



Did I really defend my anger over the pharmaceutical industry a month or so ago when that pharmaceutical rep commented on my blog? What was I thinking trying to reason with that person? This morning I read the Los Angeles Times' report on the Oxycontin clusterfuck. It's titled 'You want a description of hell?' Oxycontin's 12-Hour Problem. Read it and come on back and rage on with me.

Despite all the clusterfuckery going on in the Presidential race, the particular topic of the pharmaceutical industry's stranglehold on -- let's just say EVERYTHING -- is of way more interest to me. It might be a stretch, but it's why I don't trust -- let's just say EVERYTHING -- germane to Big Pharma. That would include some of my favorite non-profits, like The Epilepsy Foundation, that get huge perks from pharmaceutical companies. That would include the CDC and vaccination policies, so if you're of the mind that I'm immoral, anti-science, stupid or otherwise cray-cray, do me a favor and fly, my pretties, fly!

I sort of feel like going rogue.

Remember my rant against the government and marijuana policy the other day?

Remember the nice physician I talked to at my friend's house over spring vacation? He objected to my bitter comment that neurologists who continue to prescribe multiple anti-epileptic drugs to their patients with refractory epilepsy are unethical.

They're unethical.

Why is marijuana not rescheduled, yet? Is it because the big pharmaceutical companies are working their asses off to make a synthetic version of the medicine and have so influenced lawmakers on both sides of the proverbial aisle that nothing will happen until they've discredited the grassroots movement enough to take total control?

Why am I still having to persuade family members of the efficacy of medical marijuana in lieu of powerful and addictive painkillers?

Why did I rip open the last box of Onfi in the supply I bought months ago, order a refill and get the runaround, once again, from the insurance company? Oh, I forgot. Onfi is a powerful and addictive narcotic that's not good for much other than sedation and temporary alleviation of seizures. And there are lots of people addicted to it and its even more formidable auntie, Klonopin, so the government has wizened up and is becoming stricter about how much you get and how often. I think at some point it was touted for restless legs, and sleeplessness and anxiety, but god forbid you should take it for over eight years like Sophie has, because then you're stuck with it maybe FOREVER.

Let me tell you this: Sophie is on the new strain of WEED, and it's working. She goes weeks with only one or two seizures. What do you think of that? Anecdotal? I work my ass off getting input from her medical marijuana doctor, my fellow mothers and fathers in the cannabis community, and my own reading to tinker with the strain and the dosage and the timing, and sometimes we find a sweet spot and it's glorious. Letting go of all the conventional stuff feels glorious, too. I'm no longer donating money to foundations that are underwritten by pharmaceutical companies. I'm not serving on any more boards of these companies, no matter how much "good" they do. I'm not going to vote for any politicians who receive large sums of money from pharmaceutical companies. That might mean everyone, so I'll write in a candidate instead. Like I said, I'm going rogue. I wish that I could let go of the Onfi and the Vimpat that Sophie's still on, but unfortunately, if I did so, she'd probably die. That's right. The withdrawal would probably kill her. So I'll continue to rip open the boxes and draw up the drugs in hopefully tinier and tinier amounts until she's off them completely.

Then, I'm getting stoned myself.


Tuesday, May 3, 2016

After a Big Seizure and Before Dressing



There's something about pulling a sock over Sophie's slender foot that brings tears. It's a tug at the heart, at the eyes, at the arch in her foot that resists. I'll jerk it over some days, frustrated. Help me out, I'll say. Sometimes, goddamnit. I'll gently work it over on other days, a whimper in my throat.

It's difficult to defend the integrity of another person who can't do it for herself. It wears on the soul. The wearing, though, is like clothes. A garment to mask vulnerability. The wearing is from the outside, not her. It's from you. We shouldn't have to defend or even wear the clothes.

To be naked is to be true.

You would know this if you did this. Pulled socks over feet.

(But what does she actually do? She doesn't really learn, does she? I think I'd rather not be alive. I don't want to be a burden to my children. We aborted the baby because of the defect.)

All life while alive has value and the value is not something measured. There's no counterweight to balance.

I can whimper, shed tears, be impatient. I can also feel honored. All of it. Honor in the doing.

Do you get that?

Monday, May 2, 2016

During my absence here on the old blog,




my parents were present for four days. We had a lovely time, catching up, visiting LACMA, the beach and just hanging out.  I had probably one of my top five star sightings at LACMA where we visited the Robert Mapplethorpe and Reigning Men exhibits. Look who was walking out of the Mapplethorpe:



I locked eyes with her and then proceeded to get all fluttery and goofy. She walked away, and I begged Oliver to give chase and take a photo. He came back with the proof. I then had to sit on a bench and explain to my parents who she was, what she did, why I was acting so goofy. It's Patti Smith, ya'll, looking exactly like Patti Smith.

I don't know where to start as far as catching up. At risk of too much shameless self-promotion, here's an interview I did with Amy Silverman on her wonderful blog Girl in a Party Hat. Amy is the writer who I am meeting with (or with whom I am meeting) to "engage in conversation" this Friday night at our local independent bookstore. She's written a wonderful memoir titled My Heart Can't Even Believe It. She's so generous to have promoted me on her blog by asking me some questions about blogging and my own writing.

Speaking of. My own writing. Lordy lord. I have got to get going doing it. I'm in a distracted slump. I've got short story ideas piling up and the manuscript that I worked on over the summer on my Hedgebrook residency is languishing, to say the least. The thing is I am distracted. Some of the distraction is heavenly and some is just plain laziness. My job at Marijuana.com has come to a grinding halt, too, so I really, really need to drum up some bizness. If you can think of anything, let me know.

Here are some photos that I took over the weekend. I'll be back with more words soon.















Thursday, April 28, 2016

Heads Up for a Conversation Between Amy Silverman and Me




We'll be talking about writing, parenting our Sophies (yes, they're both named Sophie!) and most importantly of all, promoting Amy's wonderful memoir:

My Heart Can't Even Believe It


If you're in the neighborhood, come on out to hear us. If you live elsewhere, buy the book at your independent bookseller or order from Amazon!

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