Wednesday, December 31, 2014
Sophie had a big seizure while I read to her this morning, and I couldn't summon up the energy to care in the way we want to care. Here we go. Sometimes when Sophie has a big seizure, I go nearly numb, my mind blank. I go through the motions, but I'm not really there. On mornings like this one, I imagine my old brain and body begins its tiresome cortisol rush -- start pumping the heart! put the stone in her throat! push water out the eyes! slow down the lungs! let the blood flow! -- but sees the body is calm, even bored. She's done this before! It's one of those times! There's no fight nor flight. The orders are withdrawn. I hold Sophie, tell her quiet things, tell her nothing at all.
A host is someone who welcomes a stranger or a friend, takes charge of the stranger and the friend, takes care of her. A host, though, is also an animal or organism on which a parasite resides. I feel like a host sometimes, the second kind. I lay next to Sophie when she was done and brushed my hand over her forehead, closed my own eyes and then opened them, looked up with her, as her. A jellyfish hung and swayed in the air, a mermaid looked down, the air rippled as if it were water and could be broken through, maybe, toward light.
It's the last day of the year, and in lieu of the usual lists and hearkenings back and rueful confessions and regrets and moans and groans and hopeful looking forwards, I'm going to leave the link to the Realm of Caring's most recent newsletter. Most of you who come by here (thank you!) daily know that the Realm of Caring is the non-profit organization that has been instrumental in educating the public about the positive effects of cannabis, particularly for those children who have refractory epilepsy. What you might not know is that there is a fairly sizeable group of people (in addition to those with conservative "values," the government's anti-drug zealotry, the medical world's obduracy or those who are just plain ignorant) who not only object to cannabis for the usual reasons, but who object to and accuse the people from Realm of Caring, including the Stanley Brothers (who grow and produce Charlotte's Web), Paige Figi (Charlotte's mother) and even little Charlotte herself, as charlatans.
They've all been subject to negative and venomous remarks, to untruthful accusations, to hate mail, to harrassment and even death threats. Yes, even little girls get death threats when their mother is working tirelessly to get medicine to other children like her own. I think the only way to counteract the naysayers, the crazies and the angry is to provide the truth of one's own experience, and our truth is that Realm of Caring has been nothing but supportive and professional in its dealing with us and that their "dealings" are nothing like the usual business of epilepsy. I mean that. Of course, there's also the fact that Sophie has dramatically fewer seizures going into 2015 and is on nearly 50% less medication than she was going into 2014, all due to Charlotte's Web and Realm of Caring. Despite its prodigious capacity, my imagination stops short at expressing what this year might have looked like if Sophie hadn't tried Charlotte's Web.
Here's the link to the newsletter, filled with exciting news and infographics as well as interesting articles that will educate you about what's going on legislatively. Oh, and there's a blog post included written by yours truly -- an incredible honor for me!
Highlights and Updates From the Realm of Caring
Tuesday, December 30, 2014
All Your Horses
Say when rain
you more wet
or a certain
deepen and yet
you think it again:
you have lost
count. A larger
no longer a
There has been
a collapse; perhaps
in the night.
Like a rupture
in water (which
of course). All
broken out with
all your horses.
|Breached reservoir -- Nashville, TN 1912|
Trampolines were involved last night when I dreamed of you. You were lying on a grassy knoll at one point (why, why are those two words only associated with JFK?), and when you disappeared, I made my way over a giant trampoline back to my real life.
Today, I have a hangover and it's not from alcohol.
I got an email from a publicist at IHOP who asked whether I'd like to write about their upcoming promotion. If your New Year’s resolution is to enjoy more of IHOP’s delicious buttermilk pancakes—and whose isn’t?—you’ll be happy to know that we’ve brought back ‘All You Can Eat’, one of our most popular traditions and one that guests look forward to all year long, the publicist wrote, and my memory cast back, way back, to Nashville, Tennessee and a guitar player I thought I loved but really didn't. We ate mushrooms together and laughed through the day and into the night. Did we really go to a mall and walk around clothing displays? He was always so enamored of my hair, and it was short then, way too short. I should have known. In the wee hours of the morning, we went to IHOP and ate stacks of them --buttermilk pancakes -- slathered in syrup, then made our way back to the guitarist's dark apartment, hungover, grim.
Should I share this story with the publicist, my memories of stacks of buttermilk pancakes at IHOP entwined with hallucination, illicit and breached love?
Monday, December 29, 2014
|image by Owen Gent|
I quietly add the books I've read during the year onto a list on my sidebar which some of you might have noticed, but I do that, really, for my own pleasure. I admit to loving a list, and I get a bit of a thrill going over book ones in particular. Here's my list of the top five books I read this year:
- Dept. of Speculation by Jenny Offill
- A Constellation of Vital Phenomena by Anthony Marra
- Life After Life by Kate Atkinson
- Couples by John Updike
- Men Explain Things to Me by Rebecca Solnit
Here's a list of books that were written by writer friends, all of which I hope you'll buy and read yourself, because they're fantastic:
- Life Drawing by Robin Black
- Angel Food by Brittany Tuttle
- Atmospheric Disturbances by Maggie May Ethridge
- Jamaica Dreams by Rosemarie Robotham
- Birthmother by Denise Emanuel
- Stone and Spring by Brittany Tuttle
- Don't Make Me Say Goodbye by Mary Moon
- Euphoria by Lily King (she's not really a friend anymore, but she used to be when we went to college together so many years ago. I've lost touch, but I'm proud of her because her book is a huge success and a great read, to boot!)
And here is a list of books that I thought I'd love, that everyone else seemed to love, that disappointed me and that I couldn't even finish:
- The Goldfinch by Donna Tartt
- The Luminaries by Eleanor Catton
Whether you are a list lover or not, what are your favorite five books of 2014 and your least favorite?
Sunday, December 28, 2014
I was moved yesterday when I read my friend Carolyn's short post Presuming Competence about what she's doing with her son Ben these days. I was moved, and I also felt familiar twinges of guilt. Many years ago, I took Sophie to see the acclaimed Soma in Austin, Texas, and while Sophie responded somewhat to her techniques, seizures and crisis got in the way, at first, of follow-up, and then I just
Some people claim that there's no use for guilt, and as a former Catholic, I understand that in part, but I disagree, too. Guilt plays on the edges of Despair, prods me into changing something, interrupts the terrible partnership of Despair and its lover, Paralysis.
If all I ever do is read to him, discuss things with him, teach and give him a chance to offer feedback through choices written on paper, it still opens his world much wider than it's ever been. It's too easy to leave him alone to stim with his objects of choice, like his shiny crinkle paper, and not engage with him. There's a time and place for those things, but they shouldn't be all of his life.
This morning, I spent more time than I usually do with Sophie, talking to her, playing with her and then climbing into bed with her and opening up a large-print version of Stuart Little. I began to read, and do you know that Sophie quit humming and stimming, kept her head back on the pillow and very quietly listened? We read two chapters that way, and when I began the third, she sat up and looked away. I took the cue, put the book down and got up. Next time, I think I will pose some simple yes/no questions and see what happens.
Guilt interrupted paralysis and despair and instead enabled the gorgeous prose of E.B. White to dance around the mystery that is Sophie's understanding.
Saturday, December 27, 2014
I never wonder to see men wicked, but I often wonder to see them not ashamed.
Jonathan Swift (1667-1745)
Henry and I went to see a matinee of Unbroken, and I'm glad we were able to walk out of the theater into such blue clarity. I've seen two war movies in the last few days -- that and American Sniper. Despite having seen all the big war movies of the past, I don't generally go to see them anymore. That's mainly because they make me nearly physically ill. American Sniper (I saw a screener at a friend's house), despite the excellent acting and general hunkery of Bradley Cooper, definitely made me feel sick to my stomach. The main words that come to mind are not hero, liberty or patriotism. They are waste, stupidity, tragedy and folly. No matter how honorable, I don't see any glory in being capable of 160 kills, and while the movie did a good job of showing the collateral damage of such a feat, I can't help but think of how many young and impressionable people -- maybe even old and unswerving people -- will be impressed, will think that whole shitstorm in Iraq was a necessary evil, will fancy themselves as Bradley Cooper with his steely precision. I thought the movie entirely predictable, too, and like many war movies, it manipulates the viewer, laying out moral dilemmas in simplistic ways that do more to shore up predictable responses than change ways of thinking about war. Like I said, I feel physically ill when I think about the invasion of Iraq, the slaughter of hundreds of thousands of people and thousands of soldiers, the decimation of towns and cities and infrastructure and the destabilization of an entire region, all wrought by us, the United States of America.
Angelina Jolie's Unbroken is one hell of an intense movie, and while I can't say I enjoyed it, I was impressed by the story-- impressed by Zamparini's grit and heroism and, finally, story of forgiveness. I'm also impressed by Jolie and how she told the story. The relentless scenes of torture by the psychopathic Japanese war camp commander made me think of Dick Cheney, to tell you the truth, and the mindless minions who carried out torture in our name, for our country, on prisoners and alleged terrorists. I know Cheney himself didn't do the water-boarding, the beating, the forced standing and no sleeping, the rectal feeding and the psychological tormenting, but he helped to authorize it. The Watanabes and Cheneys of the world remain obdurate and unapologetic about their actions, and there's not much we can do about that, I guess. I told Henry that anyone who believes it's okay to torture war prisoners collaborates with and is no different than that Japanese commander. I mean that.
Madness and absurdity.
I think what I need to do now is watch my favorite war movie, King of Hearts, where the madness and absurdity bring only tears, not physical revulsion:
Directed by Pawel Pawlikowski, this Polish film set in the early 1960s and the Stalin dictatorship, is so staggeringly beautiful that I am hard put to even attach words to it. The title character is a young woman who has grown up in an orphanage run by nuns, and before becoming one herself, she is told by the Mother Superior that she must seek the truth of her heritage, a journey that leads to her aunt, an embittered yet valiant and beautiful woman, a state judge and loyal member of the Communist Party. Shot in black and white with an extraordinary number of still moments that defy all your expectations of what film -- moving pictures -- can do to your mind and heart, Ida made me gasp, mesmerized me and is my favorite movie of 2014.
More 3-Line Movie Reviews
Get on Up
The Grand Budapest Hotel
Friday, December 26, 2014
The urge to take it all down has to be tamped because I just don't have the will to do so, and Oliver who would ordinarily be the one to help has left for a week for Switzerland with his father. Diehard readers might remember last January's fiasco, when his passport didn't arrive in time, so his open ticket is being used at this moment. It will be a quiet one in Los Angeles -- just me and Sophie and Henry, and Henry will be using his father's car to ride around the shitty with his new license and his girlfriend. What to do? What to do? What to do? I ate an egg and a piece of toast and four Pecan Puffs. I ate a salted caramel and a bite of nougat. I sat in bed for hours and continued to read Strange Pilgrims, marking it with post-its -- such beautiful passages to share with the salon I'm hosting in January. I dressed Sophe in the sweater and jeans I bought for her for Christmas, told her that she looked beautiful and kissed the tip of her nose. I had the fleeting thought that though near twenty years, no boy will ever drive all over the shitty to pick her up and take her places, admire her clothes and kiss the tip of her nose. Sigh. It was fleeting. Everything is fleeting -- even the dudes in the dirt pit that used to be the house behind us, their Bobcat moving and dragging the dirt, digging holes, building illusory foundations. The day is chilly and the sky is blue.
Thursday, December 25, 2014
Well, if Jesus had been born in southern California, the day might have been similar to this one -- breathtakingly clear, the skies wiped clean and brilliant blue, the wind rustling through the palms so vigorously in the wee hours of the morning that I woke quite suddenly and lay in my bed and just listened, wondering what was up.
The Teenagers all slept in this morning, so I was able to take a quick photo of what Santa brought. We're a family that doesn't wrap presents, so Santa bent his will to our customs and left each teenager her and his own pile.
Everyone was happy. I had three of my favorite Instagram photos blown up and canvassed -- each one showed Henry, Sophie and Oliver doing their favorite thing. I pretended to give each one to the kids, but they are actually for me.
One of my sisters gave me this Frida mug -- when my neighbor called to say that she had hot mulled wine at her house, I walked over and filled Frida up.
Later, I insisted on some group photos outside by the poinsettia tree. Ya'll there is NO FILTER on these photos. That's how blue the sky was (above) and how red the flowers. Jesus absolutely should have been born in southern California because there might not be better winter solstice weather anywhere else. I'm so grateful to live here -- always.
Oh, here are the group photos. I won't tell you what sort of words came out of all of our mouths in the taking of these photos. Some things never change, right?
We're winding down, getting ready for our Christmas Dinner with Uncle Tony. The Husband is grilling steaks and doing some other magical things in the kitchen. I'm drinking milk punch and tending to Sophie. All is calm. All is bright.
Merry Christmas to you and yours!
Wednesday, December 24, 2014
|Red Velvet Buche de Noel with|
I'm wiped out from baking and frosting and decorating but am grateful for the bit of work. I need more work in 2015, okay? Universe?
|Red Velvet Cupcake with Peppermint Buttercream|
Remember this photo from a few years ago? It's so silly and makes me happy:
Merry Christmas Eve, lovely readers!
Tuesday, December 23, 2014
I was about to lose my mind.
Oliver kept repeating the following:
That hurt like a butt cheek on a stick.
When I say, "kept repeating," I meant it -- over and over and over -- incessantly. In a redneck accent.
Henry raised his hand to punch his brother and apparently thought better of it.
My mind is lost, but my selfie skills are intact.
Reader, how was your Tuesday before the Hellidays?
Monday, December 22, 2014
Maybe it was the thought of Joe Cocker's writhing limbs and his raspy voice silenced, or maybe it was the blue sky, the eighty degree day, and the flying down the 101. Maybe it was Sophie playing with the colored beads that hang from my head-rest, playing with them as if on automatic pilot (what, exactly does that mean?), their rustle, how damn long she can do it -- reach for the beads, rustle them together, let them fall through her fingers, reach for the beads, rustle them together, let them fall through her fingers, her pale face, wondering what she'd look like old. She's nineteen years old, got ways like a baby child, sang Muddy Waters. A lover gave me a cassette thirty-two years ago, a love letter on tape. I remember the songs on the cassette, the tiny writing on the slip of paper slid into hard plastic. I don't remember where it went. The tape, the love. I wonder where it is.
Will I be driving her like this when I'm old? Will she be playng with the beads, like this, when she's old? But, here we are, and it's now.
This was then. Traffic's Empty Pages, Arlo Guthrie's Heavenly Shoes, The Byrds' Ballad of an Easy Rider, Van Morrison's Astral Weeks, John Lennon's Oh, Yoko, Roxy Music Smoke Gets in Your Eyes, Muddy Waters' She's Nineteen Years Old.
Reach for the beads, rustle them together, let them fall through your fingers.
Sunday, December 21, 2014
You know how people respond to things like the Sony/Amy Pascal/racist comments/North Korea thing by saying stuff like How could they be so stupid to write it down?
Whenever I text or write things like I wish I could just blow the whole place up or I just want to die, I wonder if it could one day be used against me even though I'm referring to the instance when I was fluffing Sophie's quilt and accidentally banged into the cheap Ikea paper lamp and so much dust went flying that I started choking on it, or the time when I ordered a hot fudge sundae from the fancy artisanal place and I didn't have time to eat it before a scheduled massage so I gave it back and then ran to the massage place where I was told that my masseuse had an emergency and we're so sorry but there is no one free for your appointment. Basically, I was out a sundae and a massage and it was one of the worst days I'd had in an age and both things were the remedy for the worst day, so I was f**ked. I cried in both instances, once as I finished making Sophie's bed and once in my car where I retreated without sundae or massage. What I really wanted to do was stomp my foot and cry in front of someone in both instances, but I actually texted a friend that I wish I could just blow the whole place up (my house) and I just want to die! (the massage was going to save the day).
Then again, I'm not the head of a giant movie studio or a dictator, but just a woman whose larger concerns are usurped at times by trivial or even bourgeois ones. I think it's doctoral students in English who call those signifiers or something. I was married once to a doctoral student in English literature and met a lot of people who lived and died by deconstruction. I never really understood it, nor the French people who made it up.
This morning I went to Ralph's and bought a literal basket full of things that are bad for you -- white flour, sugar, butter, chocolate chips, Crisco, chocolate wafer cookies, cinnamon balls, powdered sugar, brown sugar, a package of proscuitto bits and some pasta. I also bought a single slice of cheesecake with canned cherries on top and piped whipped cream. I don't know why I bought the last one because all the former stuff was for Christmas baking and one dinner, but I ate the slice of cheesecake in my car with a plastic fork. A few minutes later, I confessed to a friend via text that I'd done so (and here I am doing the same for you) and asked her whether it was too late to develop an eating disorder. She said yes, and while I don't mean to poke fun at what I know is a serious mental health issue, I honestly wanted to make myself throw up, and I still don't know what came over me as I'm not a binge eater.
Tis the season to be jolly.
La La La.
Saturday, December 20, 2014
I felt only the tiniest need to explain things to the young girl at the store where I bought Sophie this necklace today. Henry and I were also buying a present for his girlfriend, and for a moment I believe the girl thought that it was part of the present. I made it clear that the necklace was for my daughter and not the girlfriend and let the image of the middle-aged woman buying a necklace depicting a marijuana leaf for her disabled daughter be a mysterious one. How many chances remain to be a mystery when you're 51 years old?
Sophie remains a mystery at age nineteen.
And isn't it mystery that this weird and ancient plant is changing our lives?
So, last night I made gnocchi with Italian sausage and Savoy cabbage. I'm using this very cool food service called Blue Apron which you should check out all on your own as this is not a sponsored post nor an infomercial (I only hawk friends' books and creative endeavors). That's Saint Carmen in the background, helping with Sophie. When the boys sat down to eat, I learned that they had made a bet on whom could keep their hands the straightest throughout the meal for the longest time.
They set the table that way. They got drinks from the fridge that way, including ice. They sprinkled parmesan cheese that way, and they ate and drank that way. They also laughed huge guffaws throughout the dinner while Carmen, Sophie and I shook our heads and occasionally burst out laughing, too.
Reader, you know how you wonder what dark secrets lie behind families' seeming normalcy?
There is no darkness here, and there might not even be light.
There is idiocy of the merriest proportion.
When Oliver started screaming that his hand was stuck and then, for real, started to nearly cry because of the pain, when I stopped drinking my 22 oz. bottle of hard cider long enough to rub his cramped hands vigorously, Henry declared himself the winner.
Later, I had to lie down to digest all the merriment and my 22 oz. hard cider.
How lovely are my branches.
Friday, December 19, 2014
Thursday, December 18, 2014
There are many things making me feel like I'm running off the rails this December. There are also many things that are giving me pleasure. Here are some:
1. Those Janis Joplin stamps. The package looks like a single record, and on the other side is a great big photo of Janis. They have Jimi Hendrix ones, too.
2. I heard this song on the radio yesterday, and it made me happy. It makes me cry a little, too.
3. This list of NPR's Maureen Corrigan's favorite books of 2014 gave me that overly-stimulated feeling that I still get when I go into a library or a bookstore and realize how many books there are to read. It's the good kind of over-stimulation, not the frantic one laced with anxiety that I get when I realize how much money shitty movies make during the holidays.
Sometimes You Can't Pick Just 10: Maureen Corrigan's Favorite Books of 2014
4. Yes, my house looks like one of those obnoxious Christmas shops in a tourist town, but I have several tableaus (if you will) that give me pleasure. Here's one:
Here's a close-up of the bowl and the weird baby that creeps some out but gives me pleasure:
5. I listened rapturously to the last episode of Serial, the podcast from This American Life. It was really pretty fantastic and highly addictive. It also saved my sanity in the car the last few weeks.
Reader, what's making you happy or giving you pleasure or helping to save your sanity during the Yuletide Season?
Wednesday, December 17, 2014
The positive thing about getting Anonymous comments that are -- let's say -- critical, is that they inspire some thought for me beyond caregiving and dildos and the weird Swiftian farce that is unfolding at Sony. Yesterday, a reader left a comment on my Oceanside Hustle post, suggesting in that ever so gentle tone of the righteously passive-aggressive that I should stop complaining about lacrosse and, rather, begin reveling in the blessing of having a son who can participate in sports.
Reader, I felt the ping of insult and the pang of hurt. I might have felt the teensiest bit righteous, myself. I left a quick and flippant lighten up reply, but I also recognized that queasy you are way too exposed kind of feeling, and then I did a little navel-gazing and figured the reason why I felt these pings and pangs is because there is always a modicum of truth to every bit of criticism that hurts us. I do complain a lot on a moon, worn as if it had been a shell, and I'm hard-pressed to feel grateful for anything on some days. I think a lot of bloggers would agree that complaining is easy to do and can be almost enjoyable, particularly if it's couched in humor or sarcasm. At risk of sounding defensive, my complaints about the trivial stuff in my life (the constant sports watching being the main one) are surely balanced by the obnoxious number of posts where I stand in awe of the two wildly accomplished, beautiful sons that grace my life and the profound and graceful presence of my amazing daughter, all three of whom are such individuals that I can't take any credit for their being other than the literal bones, tissue and flesh with which they're knit from my own and their father's bodies.
But maybe I can do better.
My gratitude for this good fortune overflows. I'm also alive and dancing on this tired earth as fast and as best as I can.
Peace Anonymous. Now go get yourself a stiff drink and lighten up.
Tuesday, December 16, 2014
|Temecula, CA December 2014|
So, I was talking to a fellow caregiver yesterday who was having a particularly grim and hard day. Milestone birthdays were involved as was squabbling with The System, and my friend was feeling crabby and exhausted. I told her that as I've grown older and the years have ticked by, I find myself tackling The System in bits, handling maybe one thing a day -- or week or month. Maybe I should say that I handle only one thing a day or week or month not because that's all I can do in any given day or week or month but rather because the effect of doing that thing is generally so debilitating and stressful that it takes at least a day and sometimes a week and maybe even a month to recover. And maybe the reason why the effect of doing that thing is so debilitating is because I've been doing that thing or some other thing for nearly twenty years -- meaning, the effect is or has been cumulative. Meaning just the thought of being on hold and then dealing with Medi-Cal or Anthem Blue Cross or Assurant or the State of California or Accredited Nursing Agency or The Neurologist or The Wheelchair Broker or The Los Angeles Unified School District or The Powers That Be or The Diaper People in St. Louis or the $9,345 chariot bill or the texts from the teachers and aides about seizures or drooling or bowel movements or knees out of joint or constant stimming and humming is enough to have made and continue to make me just this side of crazy.
Or maybe I'm just burnt out.
The one thing I did today was make a call to the agency that helped me to fill out the paperwork and gain conservatorship of Sophie two years ago when she turned 18. I called an attorney at the agency to ask her whether she could help me to figure out Sophie's Medi-Cal situation (and I prefer to pronounce the word situation like the French sit U AH SEE ON with an emphasis on that last syllable because that's what people just this side of crazy do to cope). I'm not going to tell you why I need help with Sophie's Medi-Cal sit-u-ah-see-on because that would be another thing, and that another thing happened last week when I spent three hours with Medi-Cal themselves trying to figure it out. I told myself when I hung up the phone then that I would deal with the sit-u-ah-see-on next week, because I knew it would take about a week to recover. So, I made the call today and left a message and that's it for today. That's all I'm going to do as far as sit-u-ah-see-ons go.
I hope someone out there finds this helpful.
For the rest of you, here's a funny story.
Oliver has been using the word dildo in a joking, obnoxious, thirteen year old boy way for the last couple of weeks, and during one interminable stretch of it, I said, Enough! Enough with the word, Oliver! Just enough! And he stopped and said, Mom, do you even KNOW what a dildo is? and Reader, I controlled myself from bursting into flames or laughter and then told him that if he asked me another dumb question, I'd give him a lecture on onanism.
Monday, December 15, 2014
So, in lieu of having a heart attack, I thought it might be more constructive to document the bullshit going on in our neighborhood. This morning, the 75 year old house directly behind us was razed to the ground in about two hours. Disgusting, right? Now the lovely people who are doing this are uprooting trees that line the three borders. I snapped that picture from the front of the used-to-be-1924-house -- it stood where you see all the dirt; that's the driveway that the guy is sweeping, that red peak is our garage on the other side of the fence. At some point after 12:00, when I was leaving the wonderful Dr. G's office (who provides us with our medical marijuana card! It's been one year and we had to have it renewed!), I received a very tearful call from Oliver. He was beside himself, in agony, really, because they're cutting down all the big trees!
I still had to drive all the way home, and I did so wishing that my southern Italian ancestors would somehow materialize and take care of things. When I reached the street where the devastation was occuring, I made out who were workers and who was a boss. I was tempted to take a photo of the guy in charge, but to tell you the truth, I felt a frisson of not just disgust but fear. He was --- well --- large. In every way. He was smoking a big, very fat cigar and talking on his cell phone when I pulled up in my sexy white Mazda and rolled down my window.
So, are you in charge here? I asked in my lacrosse/disabled kid/homeschool mother voice.
Reader, he didn't even take the cigar out of his mouth, and like someone out of central casting just down the road in Hollywood, he said Yep, and I said, It would have been nice if you'd let us know you were taking out the trees and the fence, and he said nothing and shrugged his big ass shoulders and continued talking on the phone so I rolled up my window, put the pedal to the metal and tore around the corner and into my own driveway where I proceeded to race to my computer with my sons and google stinkbomb.
Just kidding on the last part.
I woke up to the sound of crunching metal and shrieking glass, a tile roof smashed in, the house behind ours leveled to the ground by construction monsters.
Screw developers and those who would tear down perfectly sound near-100 year-old homes to build big box monstrosities. Screw the conspicuous consumers who want to buy these soul-less houses, multi-million dollar Tinkertoy constructions with indoor fountains and postage stamp pools, their second story outdoor features that peer down into their neighbors' (us) bedrooms and block the sunlight.
Screw all of them and the beasts they ride in on.
Sunday, December 14, 2014
|My hotel bed, where I lay for many hours this morning with muddled, joyful thoughts|
I can't persuade myself that writing is honest work. It's great fun and I love it.
For one thing, it's the only way I can get to sit down.
A few months ago, a couple of my writer friends sent me notices about Hedgebrook and persuaded me to apply for a residency, so I did -- at the very last minute -- and took no notice afterward. Yesterday afternoon, in the middle of a lacrosse game, I glanced away from the game and opened an email that said this:
Congratulations! We are pleased to inform you that the Selection Committee has awarded you a 2015 residency at Hedgebrook.
Having narrowed the original 1466 applicants to a final group of 102, the committee awarded 40 residencies for 2015. You are one of these select few.
I am honestly stunned and have remained so for nearly two days. I woke this morning in the hotel room in San Diego where Henry and I were sleeping and had what I call morning madness, the thoughts that plague you in those dark, dark hours before dawn. How will I pull this off? There must be some mistake! Surely there are others more deserving? It might be impossible for me to accept this! What kind of a mother leaves her kids for three weeks to WRITE? Surely this is a joke! I'm selfish for being so excited. You know the drill, right? The lazy, bourgeois byzantine rambling thoughts of the morning hours. Then came three lacrosse games and a three hour drive back to Los Angeles.
Apparently, I actually did get a Hedgebrook Writing Residency. Holy mackerel! My gratitude knows no bounds, but holy moly! Thank you Hedgebrook!
Saturday, December 13, 2014
This time we're in San Diego, and Henry played two games of box lacrosse today. I know even less about box lacrosse than I do about regular lacrosse, but it looked as violent and crazy as ice hockey and the players had no pads. I took the photo above at the moment Henry crashed into the wall. Instead of screaming, I took a photo. Don't judge me -- for not screaming. I confess to actually enjoying the mayhem. Sometimes I find it hard to believe that this creature came out of my body sixteen years ago. Let's face it -- who your babies grow up to be is a damn mystery, and you can only watch it unfold, your heart pounding as they thud up against the glass, a tangle of sticks and grunts and blur, before they're gone.
Friday, December 12, 2014
The 30:1 ratio cannabis product, now classified as hemp oil, is here. Hallelujah! We are, of course, hoping that with the higher ratio, Sophie will get back to better seizure control. In the meantime, I'm so thankful for Realm of Caring and so excited for the hundreds of families that are coming off the waiting list and that are able to try this product with their children with refractory epilepsy. May it work for them like it's worked for us.
Thursday, December 11, 2014
|A book that I was tempted to buy yesterday but didn't|
It's 3:16 pm on the west coast, we're battening down the hatches in anticipation of some big rainstorm, and I've only been home for about an hour. The rest of the day was spent in my car, driving around the big shitty, dropping my children off and picking them up. When I got home I heated up some spinach artichoke dip that I found in the freezer (please don't judge) and scooped it up with tortilla chips. I'm also going to eat an apple and thereby avoid a heart attack (have you heard that eating an apple a day is as effective as taking a statin?). I am waiting for Sophie's bus to drop her off, when I would normally have to transfer her to my sexy white Mazda and head out for the Ventura Freeway to pick up Henry from track practice. Between bites of dip (don't judge me) and chips, and before the apple, though, I idly texted a friend and asked whether her son was staying late today and if so, could she pick up Henry as well and drive him home?
She said yes.
Her yes was equivalent to Molly Bloom's yes I said yes I will Yes. My overabundance of joy at not having to drag Sophie into the car and travel on the Ventura Freeway at rush hour, readers, might be difficult to understand, but trust me when I compare it to Molly and Leopold's rapture. It was that good.
...I was a Flower of the mountain yes when I put the rose in my hair like the Andalusian girls used or shall I wear a red yes and how he kissed me under the Moorish Wall and I thought well as well him as another and then I asked him with my eyes to ask again yes and then he asked me would I yes to say yes my mountain flower and first I put my arms around him yes and drew him down to me so he could feel my breasts all perfume yes and his heart was going like mad and yes I said yes I will Yes.
James Joyce, Ulysses
Wednesday, December 10, 2014
My oldest Christmas ornament is an owl in a globe from 1971. In any given moment, my house, all decorated for the holidays, can look charming or like some hellish year-round Christmas shop.
I read a greeting card today that said, Any given moment you can change your life. You just have to be there.
So far, the places where some of my friends are going for Christmas are Hawaii, Cambodia, New York City, Park City, San Francisco, Mexico and Chicago. With the possible exception of Hawaii, I don't really envy anyone travelling during the holidays. When I feel a ping of jealousy that ratchets up to resentment, I read Billy Collins' poem Consolation. That might be because we've got Sophie to contend with, and the thought of travel anywhere without her is way more difficult than travel with her. Does that make sense?
My sisters and their families are going to my parents' house in Atlanta. One of my sisters asked whether I was sad about not being able to go "home" for Christmas, and I didn't quite know how to answer that. I think the place that used to be sad is now numb. I guess I'm sad that our family can never pick up and go anywhere, to tell you the truth, and even if we were willing to suspend what remnants of sanity we have left and take Sophie on a cross-country trip, it'd be illegal to take her medicine to Georgia. And I don't wish that I lived closer to home because that would mean -- well -- Georgia. In an ideal world, Sophie would still be who she is, difficult to travel with, but everyone would come here to see us.
So, while I'm sure I'll miss a good time with the relatives, I love a Christmas in my own sometimes charming and sometimes hellish Christmas-shop home.
How much better to command the modern precinct of home
than to be dwarfed by pillar, arch and basilica.
Like Virginia Woolfe said, nothing thicker than a knife's blade separates happiness from melancholy.
Tuesday, December 9, 2014
The coward wretch whose hand and heart Can bear to torture aught below, Is ever first to quail and start From the slightest pain or equal foe.
I pulled into the donut/bagel store parking lot late this morning, whimpering. I had just listened to a bit of the reports about the torture papers that were released today, and when they spoke about rectal feeding, I turned the radio off and lay my head on the steering wheel.
We're even now reckoning with this? There's an argument? I wrote this post nearly six years ago, and here we are.
If you're a person who believes that the institution of torture is a necessary evil, that it's justified to secure liberties, the American way of life, American lives, your way of life or your life, be gone. I don't think I even want your energy breathing in this space. The rest of us Americans need to figure out how to live forward.
Monday, December 8, 2014
I am tormented with an everlasting itch for things remote. I love to sail forbidden seas, land on barbarous coasts.
Captain Ahab, in Herman Melville's Moby Dick
Exultation is the Going
Exultation is the going
Of an inland soul to sea -
Past the houses - past the headlands -
Into deep Eternity!
Of an inland soul to sea -
Past the houses - past the headlands -
Into deep Eternity!
Bred as we, among the mountains,
Can the sailor understand
The divine intoxication
Of the first league out from land?
Can the sailor understand
The divine intoxication
Of the first league out from land?
Yesterday, I scrolled through an article from Neurology Reviews that describes a "study" on 16 patients of cannabis oil. The study is brought to us by Novartis Pharmaceuticals and basically casts a pretty dubious light on the efficacy of cannabis. It will be one of several "studies" and papers about cannabis presented at this week's grand American Epilepsy Society annual meeting I also read a Medscape abstract with the unfortunate title What's Hot at American Epilepsy Society 2014, the first topic deemed hot being research on epilepsy and marijuana. In the interest of decorum, I'm not going to make any obscene jokes about the use of the word hot to describe anything having to do with epilepsy, unless you're like me and envision a layer of Dante's hell that houses not the epileptic but, rather, the world of neurology in general, pharmaceutical companies and the business of epilepsy. But, I digress.
Yesterday, I also watched a beautiful video called Wanderers, by Erik Wernquist that primarily shows us a glimpse of neighboring worlds and uses the deep and resonant words of the great Carl Sagan as an overlay. As I read the announcements of the Powers That Be in the World of Neurology, I felt only the tiniest frisson of umbrage -- the instinct to react, to respond, to feel anger and frustration. I read others' comments about this upcoming meeting, about the "studies," their own vocal irritation and anger as familiar to me as my body parts, my own particular scars and birthmarks. Yet, my own is faint and muffled, not because I am tired, exactly, but more because I have actually let it go, in spite of myself. The letting go is not some spiritual surrender to a higher power, nor is it a hands up, white flag flying admittance of defeat. It is, rather, to be blunt, more a fuck all of that, I don't care about their studies response. In gentler terms, I've accepted that I no longer feel the need for vindication outside of telling our story, telling it over and over again to whomever might hear and be inspired by it.
Here's the story: I sometimes gamely but usually with a visceral loathing gave Sophie the 22 drugs in various combinations (that had not been tested or approved for use in children) over the first nineteen years of her life in an attempt to stop her seizures that occurred mutiple, sometimes hundreds of times a day. I also tried the ketogenic diet twice. Surgery was not an option, and I thank the universe for that. None of those drugs worked well, most caused terrible side effects and some made her seize in novel ways. The ketogenic diet, so efficacious to so many, turned Sophie into a panicked, pacing and starved beast and to this day triggers near-PTSD symptoms in me when I think about it. At the end of last year, when I had not exactly given up hope but had, rather, resigned myself to constant struggle and a total loss of faith and trust in the business of epilepsy, we gave Sophie cannabis oil, first a high ratio product that a kind man found for us, and then Charlotte's Web from Realm of Caring. Sophie's seizures stopped. They stopped for weeks at a time. Sophie began to smile, be more alert, sleep better and not wake to the nightmare rounds of myoclonic jerks that had gone on for up to an hour each morning when she woke up for years. She stopped having a tonic clonic seizure (grand mal for the uninitiated) every single night at dinner for years. Sophie is not seizure-free, but I can assertively say that her seizures have been reduced by upwards of 90%, without side effects. We are weaning her from the drugs that have not worked, yet still have a malicious hold on her. Those drugs cost me nearly $200 a month in co-payments, and over her lifetime have cost many tens of thousands of dollars, an amount split up and paid, after wrangling and grappling and fighting, by corporate thieves, government, and our family at a devastating emotional and financial cost.
The cannabis costs me around $350 a month, not cheap but entirely worth it given that it works.
That's the story, Morning Glory. That's the tale, Nightingale.
The letting go doesn't mean that I've given up on helping others, on advocating in general for children and youth with special healthcare needs. It does mean that I can speak my mind as a sort of elder person on the sidelines and support the admirable and enthusiastic efforts of those younger than myself, whose children are younger and who have many, many years ahead of them instead of behind. It does mean that I can think to myself I don't give a flying fuck what pharmaceutical companies and researchers are up to, nor do I have any trust that they will work in our best interest. With rare exception, they historically never have done so. Some will take offense to not just the language but the attitude. Again, I don't give a flying foo foo. I'll fight with every ounce of energy I still have so that other children will have access to cannabis and to be able to try it, and I'll do so by telling our story as truth.
I know I couldn't have done this -- this nearly corporeal surrender -- when Sophie was a baby, then five years old, then six, then ten or maybe even twelve. I couldn't have let anything just go -- the vague, pinched stress, the dull ache of something not right. The years of anger, of battle. The nagging sense of absurdity -- is it part of my own individual character or of the system itself? Or both?
It feels a bit like I've wandered, finally, into some new world.
Sunday, December 7, 2014
It was a glorious morning in Oceanside, and this particular morning Henry and I had the arguable privilege of seeing the sun rise. The skies heading down were watercolored in sorbet tints, and with the water glinting blue, despite my fatigue, I felt grateful to be awake and alive on the west coast at sunrise in December. Of course, several hours later, I continued to work on my unibrow***, this time paying careful attention to the various fathers screaming at their sons. I noted three distinct expressions that were shouted in the general direction of the players in various tones of distress:
GET IN THE HOLE!
GET IN THE CREASE!
With the exception of the last, I still have very little idea of what the other two commands might signify, but please -- no spoilers. I prefer to remain ignorant, perhaps proudly so. That way I can just beam and admire my son's exploits on the field with little knowledge of anything that he's done wrong or right. And since he plays defense, there's little chance that I'll know anything anyway as his chances for making a goal are slim, and I do know when a goal is scored. I also know that after a goal, there's this thing called a face-off where two boys from opposing teams kneel or almost kneel in the turf and do something hidden with their sticks trying to gain possession of the ball. I think it's the lacrosse version of flipping a coin if there's such a thing as a skilled coin flipper. Henry occasionally stands on the side in a racer sort of position with his stick at the ready during this maneuver, and as soon as the ball moves, he runs onto the field and around a little bit and then off. I asked my neighbor sitting in a nifty hammock-like chair today, what, exactly, that move was called, but I couldn't understand his explanation (there's always a lot of mansplaining in sports, hence my analogy of growing a unibrow***). Here's what I'm talking about:
I'm glad that I got those photos, so if you're a lacrosse fan and really want to express yourself, please feel free to leave a comment. Yesterday, I believe someone left me a comment about their own son being one of those kids that lies down on the field and tries to get possession of the ball. Please know that I laughed aloud and so appreciated your ignorance and commiseration! I did have a wonderful little sports family around me this weekend, fortunately -- three terrific women and their terrific sons who might be younger than Henry but whose mothers know vastly more about the game than I. All in all, Henry's team played five games, lost three and won two. The lost games were very close and very exciting, and everyone seemed happy when it was all over, so I was, too.
Reader, it's only five more days until the Los Angeles Jamboree in Escondido! Stay tuned!
***I posted a selfie of myself on the field this morning on Facebook with the caption that I was growing a unibrow for the second day, and I was greatly amused by several comments insisting that I hardly had a unibrow, that I was far from growing a uni-brow, etc. etc. I think my metaphor was a poor one as I intended to demonstrate just how boring sitting on lacrosse fields for hours and hours can be (except, of course, the glorious moments when my son plays) -- it seems interminable to a person with no sporting ability or interest, akin to growing a uni-brow.