Friday, August 28, 2015

Alice



 “I never knew I loved you so much,” Alice said to me one night as we pressed our foreheads together, she in her hospice bed and me perched alongside. I felt the same, because it seemed to both of us that the love had been there all along, underlying everything, waiting to be recognized and completely known.

I have read Andrea's blog Go Ask Alice...when she's 94 for as long, I think, as she's been writing it. Alice died a couple of days ago, shortly after her 100th birthday, a landmark that she was determined to reach and did so. I always felt a special connection to Alice because she, too, was the mother of a young woman injured by a vaccination as a baby who grew up with terrible epilepsy and who died as a young adult. That Alice's daughter, Andrea's sister Marla, looked nearly identical to my Sophie in a deep and soulful way, bound me to both of them.

Thank you, Andrea, for sharing your mother with us, for sharing yourself, too. The world is richer for having her in it and sad to lose her, however long her life. I send you love and gratitude for the great gifts you've given us and to Alice the same for giving us you.

Waning with Boys


Last night, between bites of Mirabel Plum Ice Cream and White Peach frozen yogurt with whipped cream and toasted almond crunch topping, I had the brilliant idea to begin taping my sons' constant, enervating* fights. I hoped that it might inspire them to desist, to maybe start talking about poets they love, scenes from Fellini movies or Bob Dylan lyrics. 

They fought about what the series would be called.


video










* The word enervating has always intrigued me. It's always sounded like it should suggest excitement or restlessness, maybe not exactly energizing, but something similar. It actually means causing one to feel drained and lacking in energy. Waxing is another intriguing word to me, only as significant in relation to its opposite: waning. In any case, the boys would certainly not enjoy discussing this sort of thing with me -- the curiosity of great words -- but are rather inclined to spewing simple insults at one another, the occasional death wish and punch.

Thursday, August 27, 2015

52 and Hot (not THAT way)



So far, I've had a lovely birthday. I had an early breakfast with my astral twin Debra (we have same exact birthday) and then a little later breakfast with my oldest friend Moye. I've received texts and telephone calls and Facebook greetings. We are waiting until 5:30 when The Air-Conditioner Man comes and replaces our air-conditioner with a brand-spanking new one. I am hoping that he gives it to us, out of pity for it being my birthday and 95 degrees in the house and all. If there's anything I've learned in my 52 years of life on the planet, all you have to do is ask and ye shall receive. In the meantime, the boys have built what you see above -- a sort of hacked air-conditioner that my friend Mary Beth directed me to the other night on Youtube. It kind of works. That's a cooler filled with ice, with holes cut into it for an insulation tube (the silver thing) and a fan. The video claimed it cost $8 to make, but we spent closer to $17. It blows surprisingly cool air, and I guess it's as good a day as any to remember the days of my youth, nearly thirty-five years ago or so when I lived in a dorm at UNC with no air-conditioning. Since we started school in mid-August, I spent my birthday there for four years, and the dog days of summer in North Carolina were brutal. We would take a cold shower, soak the towel in cold water and wrap our heads, then sit in front of the window fan to cool off. We've put the hacked AC in Sophie's room since seizures and heat are no good. I am waiting for her bus to get here and then will move out of the way and plant her in front of it. in the meantime, I'm reminiscing about some of the best years of my life and those left to come. Thank you for helping me to celebrate!

Wednesday, August 26, 2015

Brainless and Just About 52




I've got some whiney first world problems that include a broken air-conditioner. We're moving into one of those godawful late summer, early fall heatwaves here in southern California, and our old air-conditioner finally broke. The new AC unti can't be installed until later this week. It's about 85 degrees in the house, so I sat outside in my car, listened to NPR and then watched a great video about cannabis that the Tearful Dishwasher sent my way.



I don't know if it's the heat or just the whole clusterfuck, but the ongoing contemplation of this cannabis thing makes tears prick my eyes. So does the campaign of Donald Trump.

When I was young and in college, I went through a rather insufferable period (at least to my parents) when my eyes were seemingly "opened" to the rest of the world. I had grown up in a relatively conservative and definitely Republican household, went to a southern prep school with its fair share of Bible beaters and Young Lifers (the evangelical, feel-good group that made my skin crawl even then before I could ably articulate why) and just really never openly questioned the conservative status quo, other than to insist to my boyfriend at the time that I was in no way going to be a stay at home mother with no career and lots of kids. The insufferable part came when I started learning about more progressive and liberal values and thrust them upon my parents with all the condescension that people in their late teens and early twenties who've never had to do a single, damn thing on their own tend to do. And I know this is still going on, because I hear it from my friends with college-aged kids who come back from their first years away, militant about language and pronoun use and rape culture and on and on. When you're 50 years old and being lectured by a person in their early twenties, even if they're of a different race or nationality or sex or sexual proclivity -- well -- it's boring, to say the least. I know for a fact that my own parents were more worried that I was some sort of communist living in their midst than a drug user, for example, and I imagine to this day they rue sending me to a very liberal university that if not created a liberal me, at the very least, uncovered it.

I was thinking today, in the driveway, about those days and about that statement my mother attributed to Winston Churchill. It goes something like, If you're twenty and a conservative, you don't have a heart. If you're 50 and not a conservative, you don't have a brain. I'll be 52 years old tomorrow, and apparently, I haven't a brain. I am sick to death of everything conservative -- especially the status quo around medicine, pharmaceuticals, government and anything that claims authority. I'm in one of those Fuck It All Let's Get The Heck Out of Dodge Plant Our Own Cannabis And Make Our Own Medicine kind of moods.

Or maybe I just have heatstroke.



Tuesday, August 25, 2015

How We Do It: Part LIV



No one really wants to rage, except when there's nothing about which to do so. My own simmers below the surface of things, beautifully contained. Savory. Hot springs. Remember my story of the neurologist who had called children's services to intercede when several people I know went against her wishes and put their children on cannabis? She also was involved in an alleged "medical kidnap case." She apparently rages, when there's nothing about which to do so. She wrote this piece, posted in the New York Times. I missed it because I was in the fairy tale woods of Hedgebrook, but I read it last night, felt the heat pick up.  I picked up Sophie's refill of Onfi today, paid $60 for six boxes of liquid benzo that will, hopefully, be one of the last batches before we've fully weaned her. We've been weaning the drug for the last eighteen months, taking a tiny bit away every six to eight weeks with a predictable array of side effects that hit after three days, ten days, three weeks and then off and on until we hit a steady spot and take away a tiny bit more. We're just over 50% weaned, and we've discovered that adding a few drops of THC each day helps the withdrawal symptoms. I think about the players when I swipe my debit card to pay for the Onfi -- the researcher that figured it out, the pharmaceutical company that made it, the government that approved its safety for use, the neurologist who ordered it, the pharmacist that scraped it into the bottle, the insurance company that determined whether it should be "covered," the parents that pay for it (pay whatever amount it's worth at the moment -- $1,000, $500, $90, $63, $60, free) then fill the syringe with it, the young woman who opens her mouth and takes it, and the brain that bathes in it. It all ends there, in the bloody, wrecked bath. I am reminded, again, of the difference between resignation and acceptance, where they fall on the continuum of rage. I am a master of muted rage, the good girl gone wild only in her head.

Monday, August 24, 2015

Rejuvenation



Yesterday I read the most amazing article in the London Review of Books (a somewhat ponderous publication that I get and dutifully flip through) titled A Lazarus Beside Me by a fly-waisted woman (seen above) named Avies Platt. The piece was dated November, 1946 but chronicled events from 1937 and was only discovered recently in a carrier bag full of "diary entries and other bits and bobs." The article was fantastic -- and immensely pleasing to me -- because it's about an encounter between this Avies Platt woman and the great Irish poet, W.B. Yeats.  First of all, did you know that in the early part of the twentieth century, an Austrian physiologist developed an operation for what was known as "rejuvenation?" Meant for aging men, the operation (which was basically a vasectomy) purported to give men a "second puberty," making them virile again. Sigmund Freud had the operation (good Lord), as did Yeats. What is there to say about this and why did I not know about it, even as I read nearly every single poem that Yeats wrote and particularly love some of those crazy ones he wrote in his latter years? I'd throw up my hands and say Men!, but you know I would have been all over Yeats if he'd so much as crooked his finger at me.




A Drinking Song

Wine comes in at the mouth
And love comes in at the eye;
That’s all we shall know for truth
Before we grow old and die.
I lift the glass to my mouth,
I look at you, and I sigh.

W. B. Yeats

Sunday, August 23, 2015

Sunday Balls



I'm not in the mood to write, again. So I'll just post some pictures I took today at MacArthur Park, near downtown. They're of an art installation -- thousands of giant painted beach balls floating in the pond. You can read about the project here, since I don't feel like typing out what it's all about.

The park looks pretty dismal -- it's in a downtrodden part of town, everything is dead because of the drought, and everywhere I walked smelled like piss and pot, to tell you the truth. But the spheres were crazy and wonderful, lifting the whole place up. I had a brief fantasy about wading out into the middle of them like a despairing, dark-haired Anita Ekberg in La Dolce Vita, but instead rolled Sophie's wheelchair to the edge of the water, shoved the brake on and stood for a while to just watch the spheres bobbing. Sophie seemed to enjoy it as well, so that's good. My guilt in not providing enough stimulation for her was allayed at least for the hour or so that we walked around.






Reader, what did you do today?

Saturday, August 22, 2015

Saturday Three-Line Movie Review

How beautiful is this shot?


Learning to Drive

It's been a long time since I've seen a quiet, sincere movie with fine actors and a deep and resonant script. Learning to Drive is about a friendship between two people, a driven New York book critic played by the always wonderful Patricia Clarkson, and a Sikh driving instructor played by the formidable Ben Kingsley . The movie has obvious metaphors, is about culture and marriage and divorce, but it's so finely wrought that nothing is obvious, and I left the theater deeply satisfied (not to mention wowed by Kingsley's pink turban and Clarkson's red hair) and -- dare I say it -- thrilled that movies like this are still made with quotes from Wordsworth, Tantric sex, Samantha Bee, one of Meryl Streep's daughters and one of J.D. Salinger's sons (another story that I'll tell you about some other time).














More 3-Line Movie Reviews

Love and Mercy
Not a Three Line Movie Review
While We're Young
Ida

Force Majeur 
Gone Girl
Saint Vincent

Get on Up
Begin Again
Chef
The Immigrant

Cesar Chavez

The Grand Budapest Hotel
Gloria

Labor Day 
Philomena









Friday, August 21, 2015

Submerged

Mermaid


I don't have very much to say these days -- am feeling more contemplative than otherwise. I told a friend today that the only thing I'm interested in these days as far as current events go - or drawn to or in awe of  -- are the words of two dying men: Jimmy Carter and Oliver Sacks. One has a deep faith in a Christian God and the other is an atheist, yet both are imbued with a holiness that stuns me. If you haven't read either of their words about life and about dying, I recommend them. I could add no more.

Wednesday, August 19, 2015

#764 as Solace



My Life had stood - a Loaded Gun (764)

My Life had stood - a Loaded Gun -
In Corners - till a Day
The Owner passed - identified -
And carried Me away -

And now We roam in Sovreign Woods -
And now We hunt the Doe -
And every time I speak for Him
The Mountains straight reply -

And do I smile, such cordial light
Opon the Valley glow -
It is as a Vesuvian face
Had let it’s pleasure through -

And when at Night - Our good Day done -
I guard My Master’s Head -
’Tis better than the Eider Duck’s
Deep Pillow - to have shared -

To foe of His - I’m deadly foe -
None stir the second time -
On whom I lay a Yellow Eye -
Or an emphatic Thumb -

Though I than He - may longer live
He longer must - than I -
For I have but the power to kill,
Without - the power to die -

Emily Dickinson 

Tuesday, August 18, 2015

Update on Aidegate

Billboard outside of Sophie's school


There was some moving and some shaking at Sophie's high school this morning. I showed up at 7:45 and marched on up to the Special Ed office, handed over my letter and told the woman who took it that I'd wait until I could see the Vice-Principal. I waited downstairs in the main office for a good amount of time before finally seeing the guy. I briefly explained The Situation, handed him my letter after which he told me that his team would get back to me by the end of the day. It didn't occur to me to emphasize that as Sophie's mother, I am the head of The Team, but he appeared concerned, so I called it a morning, put on my jet pack and blasted the hell out the office, right by the receptionist with the hair-bun and box of donuts and flew on home.

Several hours later, Special Ed Bureaucrat Woman  called me and apologized for not "letting me know" about the aide change. She was going on and on, and those of you who know me know that I can be a sort of a rude interrupting kind of gal (I am trying, I am trying to be better), so I rudely interrupted her ridiculous apology (it involved a statement about how much she cared for Sophie and really wanted to find someone special for Sophie which basically means not everyone or anyone will be able to deal with Sophie, specifically her diapers) and insisted that while I appreciated the "apology," I am tired of her history of not communicating, that we've been through issues like this and they all involve communication and I have no trust in her thinking of Sophie's welfare, etc. etc. She interrupted ME then and asked whether a four day training would be agreeable, and I said let's see how it goes, but I want an IEP pronto to get this down in writing so that it never happens again. Then I threw a bucket of water over her brain with my own mind and listened to it melting until all I could hear was a trickle and then silence, so I hung up.

Sophie is going to school tomorrow and will meet her new aide who is evidently quite lovely and experienced and will be trained by her old aide until Friday. I'm finishing the vodka in the freezer.

Send Flowers



I posted my likeness to Joan Crawford holding a hatchet on Facebook yesterday evening when I learned from Sophie's teacher that her long-time aide had been assigned a different classroom and a brand-new aide had been assigned to Sophie. A friend and fellow parent to a child needing special education posted the above photo thinking something stronger was more appropriate. The teacher had the courtesy to give me a heads-up, given that it was the night before the first day of school. In addition, the brand-new aide has never worked with Sophie, and there was no transition plan in place.

I'll say it again: cue Mrs. Braddock's laugh.

After a few hours of lamentation and teeth-gnashing, I wrote a letter to the LAUSD Powers That Be and Sophie broke out in her first case of hives. If I were to believe in the edict that there are no accidents (see yesterday's post), one might be related to the other, as Sophie in all of her twenty-one-plus years has never had a hive. I put aside The Latest LAUSD Clusterf**k and spent a few furious hours kvetching with various experienced mothers about the whats and the whys of hives (as well as the pediatrician who was brief and consoling), before giving Sophie some cool compresses, extra CBD and a tiny bit of Claritin (she suffers a paradoxical effect from Benedryl, as do all my children and myself). She fell asleep sometime around midnight. I walked to the kitchen, took a swig of frozen vodka straight from the bottle (and lest you be alarmed that I'm in trouble, the bottle has been in the freezer for well on one year, swigged from on only the most necessary occasions). I went to bed.

This morning I woke to a text from our homeopath whom I had texted the night before. Even though he was in China, he told me what to give Sophie if she still had hives. She no longer had hives and was still sleeping when I drove over to her high school and waited for an hour to speak to the very harried vice-principal, who I imagine had no idea what was going on. He's been helpful in the past, particularly when he came on after I spent nearly two years trying to get a lift bus and finally made it happen. I gave him my formal complaint, he took a look and told me my team will get back to you by the end of the day. I imagine this to be his team:



Apparently, the whole notion of the parent being on The Team has eluded LAUSD, although I have the sneaking suspicion that one of the members of that team is responsible for this latest clusterf**k, as she has done it before. She is second in legendary status to the Wicked Witch of the West who used to be the Special Education director at Sophie's school and who retired, finally, some years ago.

As Violet the Countess said once on Downton Abbey:

Life is a game in which ALL of the players are ridiculous.

I will keep you posted.

Monday, August 17, 2015

Good Cop, Bad Accident, There Are No Accidents



I generally subscribe to a certain kind of chaos theory, as opposed to one of faith that the universe or God has a plan. I believe in randomness, not so much because I'm cynical or privileged but because I don't think certain things have inherent meaning until we thrust form onto them. Does that make sense?

About twenty minutes after I kissed Henry good-bye this morning, told him I loved him and watched him drive off to his first day of school and then climbed back into bed to sleep for a little bit more, I was awakened by the sound of metal on metal -- a sickening crunch that I knew instantly was a crash up the street from me. Sirens began almost immediately, as did the racket of a circling helicopter. I knew that Henry was already at school, but I got up and went out to see what was happening -- a large SUV was on its side at the corner and police cars and men had already blocked off the street and were tending to traffic. It was only 7:15 but already scorching hot, so I turned around and headed back to my house, my heart in my throat.

A little before noon, I ventured out again, this time with Sophie, and made my way up to the accident site which was still blocked off with cops guarding the intersection and the SUV on its side. As Sophie and I made our way across the street, we walked toward a cop, and I asked him what had happened. A woman in the SUV was making a left turn and hit a cop car, he said. Luckily no one was hurt too badly. I expressed relief and told him I had a teenaged driver who had left for school about fifteen minutes before the crash. He said, You know, cars are really safe these days -- they can be in wrecks like what you see, and they're built to take it and even protect the drivers. I felt a smidgen of relief, filed the statement away to share with my friends but perhaps not with my boy. The cop said hello to Sophie and asked me her name. I told him, and then he asked me whether I would mind telling him what was up with her. She has epilepsy, has had it from infancy, so it affected her development, I said. He smiled and told me that his daughter had epilepsy, too, that she'd gotten it from meningitis when she had a cochlear implant put in for deafness. She was physically able but cognitively at the level of a five year old, despite her fourteen years. She was also on two antiepileptics, both of which Sophie has been on and had done an unsuccessful trial of the ketogenic diet. I shared with the cop our story of cannabis oil, how it had stopped Sophie's seizures for the most part after nineteen years and 22 drugs. We looked into each other's eyes and smiled.

A cop and me. There are no accidents.*
















*My friend and writer Carrie Link has taught me this.

Sunday, August 16, 2015

Sunday Secular Sermon: Foolball

Leather football helmet with built-in glasses, 1930


It's time for my every other year football rant. Today's rant is courtesy of this fine article by Mark Whicker for the LA Daily News. It's the story of a young man brought down by years of brain trauma, and we all know it's been going on and continues going on and will continue to go on. The article was posted on Facebook by a friend of mine from college who happens to be Whicker's wife and also a fine sports journalist. A lot of my other friends on Facebook are posting pictures of their sons' newly buzz-cut heads as they prepare for another season of football at their respective high schools, heads that will be at a ridiculous high risk for concussion, if they haven't already had one.

I just don't understand -- on any level -- why football continues to draw tens of thousands of kids at ever younger ages when we know the chance of serious head injury is quite substantial. The amount of glory football players even in high schools continue to get boggles the mind. I imagine the same kids who play at these high schools would be thrown out of high school if they smoked one joint and were caught. Then again, smoking a joint is illegal, and playing football is evidently exhilarating, fun and wholesome, part of what it means to be an American. That's interesting to me and actually quite ironic, given marijuana's efficacy in helping football players with head injuries. Evidently, the NFL has a plan for victims with dementia, of which there are legion: $88,000 a year if you're hospitalized. Like so much else in American culture, prevention is not the key. We like to damage things first and pay up later. Bomb the hell out of a country and then award millions of dollars to contractors and corporations to build it back up. Call it hearts and minds. Pay tens of millions of dollars to fuel an industry that begins at age four or five years old, kneel in prayer before a game and then beat the shit out of the opposing team, later stand by as legions of middle-aged men become collateral, descend into madness, depression, alcoholism and dementia, pay them tens of thousands of dollars and then invest millions in businesses to make safer helmets.

Oh, and start investigating the efficacy of marijuana in healing brain injury, which I suppose has its upside. The NFL is probably a hell of a lot more influential in getting marijuana okayed by the Powers That Be than a bunch of parents with dying or epileptic kids.

Play ball!

LinkWithin

Related Posts Plugin for WordPress, Blogger...