Tuesday, September 23, 2014

Far-Sighted (and this post is all over the place)


So, I swear to you that sometime on Sunday night, while I slept, I became very far-sighted. I've taken a ludicrous pride in not needing reading glasses for anything but menus in the darkest of restaurants or the occasional small print on one of Sophie's prescription bottles or even the incredibly small print on my Healthnet insurance card (I've been reading that one aloud a lot lately). I'm 51 years old, and last time I went to the eye doctor, she marveled at how little prescription I needed for them. I've been near-sighted and worn glasses and contacts for every waking moment since I was about seven years old, but most of my friends have been carrying around those little glasses like you see above for years as I proudly flaunted my physical reading acuity. Yes, I'm using hyperbole here to make a point about aging, about how we cling on to the most ridiculous things as we age -- or should I use the first person here and not include you? Anyway, I realized yesterday and today that I need to have my reading glasses on to comfortably read anything at hand, and I swear to the good lord above that this was not an issue even on Sunday afternoon.

Anyhoo. (By the way, new readers should know that using the word anyhoo is sarcastic on my part. I actually hate the expression but find it incredibly useful when describing incredibly trivial matters, like the 24-hour period in which my eyes changed). I do like the word incredible.

Today I took Sophie to a routine doctor's appointment in Santa Monica and had much time in the car to ponder the meaning of the universe and my tiny, little life. I realized that I have been complaining and kvetching a bit too much -- not just here but probably for the last decade or so. I winced at that and hoped that a bit of self-awareness and a few mea culpas will help to remedy it. I had already traversed the northeastern stretches of the city earlier by driving Henry to school in the Valley, and this time, as I headed west, I listened to an audible version of Lonesome Dove by Larry McMurtry. Can you believe that I've never read that book? The beginning is on the man-heavy, western, folksy genre side and probably the reason why I've never read it. I'm not a man-heavy, western, folksy genre kind of woman, but just about when I reached the place on the 10W where the blue sky gives way to coastal gloom and the bazillion cars start slowing and contemplating their merge onto the 405N (who are these damn people and where are they all going? I asked Sophie who was happily reaching for and playing with the beads that hang over my head-rest), a prostitute was introduced, and I perked up and stopped pondering to listen. Prostitution is referred to as "sporting," I think, in the book, and that kept me pondering, too. I thought about how damn hard life was -- and continues to be -- for so many people, and how in many ways we are soft as a people -- not soft in the good way, but rather soft in the spoiled, take-it-all-for-granted way. Again, maybe I shouldn't use the third person, here, but should refer to my own far-sighted self. I have a good streak of soft in me, and it's a childish part whose mask is fifty-one years and a pair of reading glasses. I'm not saying that I need to take up the sporting life to understand what hard is (no pun intended), but I reckon (to use the language of McMurtry), I should get a move on from complaining and kvetching (to use the language of the middle-aged woman). If this could happen as quickly as my eyes changed, we'd all be mighty grateful.


Monday, September 22, 2014

Cat on a Hot Tin Roof That Jack Built, Part Three***



There's the house that Jack built that consists of these inane back and forths with the company that is going to administer the EEG, Sophie's doctor and the insurance company. There's also another house that Jack is building that consists of inane back and forths with the company that is going to provide the wheelchair for Sophie, Sophie's doctor, the insurance company, California Children's Services and Medi-Cal. And today, to top it all off, I got an email from Sophie's service coordinator at the Regional Center (unique to California) asking me to account for the 14 hours a month of respite that we are allotted at a little more than $9.00 an hour, as well as how it fits in with her IHSS hours and her daily activities. I was asked to fill out a weekly schedule, hour by hour, of Sophie's day -- for 24 hours. She attached an excel sheet as an example of what she expected me to do. Please note that I keep careful records, as I'm supposed to do, for all the funding that Sophie gets. I fill out timecards, scan them and send them in when I'm supposed to as well. And if you're a newbie to the houses that Jack builds, these particular services are wonderful -- and entirely necessary,as I'd really, really go insane if I didn't have them. The ultimate purpose is to enable me to stay at home with Sophie and to enable Sophie to stay at home instead of surrendering her care to the state -- or one of the other houses that Jack has built. I will add that any doubters might consider my own tax-paying ability, my own relinquished career dreams, my literal ability to have a full-time job and remain flexible to care for Sophie daily -- and deal with all of this bullshit, too.

I understand the necessity of weeding out the bilkers, the cheats, those who are eating bonbons or even those who are very wealthy yet still claim benefits. But Sweet Jesus God and Good Lord and Dear Lord Almighty and Help me, Rhonda.

I forwarded the email to my friend and comrade S in New York City whose caregiving duties would curl the tiny little hairs on your toes if I told you about some of them, and she of the insane sense of humor quickly sent this back -- probably while she was on hold with the New York City transit system or one of the many nursing agencies that she deals with daily. Her suggestions on how I should respond to the caseworker's request made me laugh out loud and cry a little, to tell you the truth, in gratitude for what saves me in the end: laughter and friendship. The only thing I've changed is the name of my "caseworker." Let's call her Joan.

Dear Joan,
I spend those hours in passionate rapture with Javier Bardem. Do you need more precise details than that?
Love, Elizabeth

Dear Joan,
I spend those hours eating spaghetti. With clam sauce. I can send the recipe if necessary.
Love, Elizabeth

Dear Joan,
I spend those hours crying. Would you like me to account for the number of tears, Kleenex used, and times I blew my nose? Please advise.
Love, Elizabeth

Dear Joan,
I spend those hours writing little ditties about the insanity of it all. My next song is actually dedicated to you.
Love, Elizabeth








***Long time readers of a moon, worn as if it had been a shell, might have noticed that I post the above photo quite a bit on this blog. Elizabeth Taylor's Maggie the Cat, particularly in that photo, captures all of the languour and attitude and sexiness that reside within me, that apparently the Powers That Be are determined to extinguish in their belief that my life consists of lounging in a doorway in my slip, a bottle of alcohol just out of sight along with Paul Newman languishing on a bed with his broken leg, not to mention Richard Burton off-set with some new jewelry.  I hope that if I keep calling her up and posting her picture, I might not lose sight of that.





The House That Jack Built, Part Two***

illustration by Collette J Ellis


This one is a prose poem, sent to me by the clerk from the company who took the paper from the doctor who ordered the EEG for the girl whose brain loves to seize. I told her last week that the company needs another paper from the company who took the paper from the doctor who ordered the EEG for the girl whose brain loves to seize.


Elizabeth Aquino

I called the phone# you gave me and after a 30 minute wait I spoke with Brandi.  She said I needed to speak with the group and told me to call 800-522-0088.   The interactive voice system told me there was a 49 minute wait!    I will try again in the morning when they first open to see if I can get through then.

Thank you for your attention to this matter.  


Please notice that this is all completely out of the doctor's hands, the doctor who ordered the EEG for the girl whose brain loves to seize, a situation which underscores how utterly laughable the conservative's complaint is that "I don't want no government coming between me and my doctor." Because we all know how efficient the private insurance system is -- efficient to an extreme when it comes to collecting your monthly premium and cancelling your coverage if you're late, but otherwise -- well -- that's another story altogethe, perhaps more in keeping with Grimm or even the Marquis de Sade. I've also got to keep you updated on the convoluted Case of the Missing Wheelchair, the latest Nancy Drew installment. Stay tuned.




***Part One is here, in case you missed it.

Taking the Lord's Name in Vain

Years ago, I used the word shit during a speech at my first wedding. Yes, I had a first marriage. I have a past, as they say. Anyway, I used the word shit, and quickly apologized, mainly because my sweet grandmother was sitting right next to me. She laughed her musical laugh, and told me in her soft, southern accent that shit didn't take the Lord's name in vain and was therefore not a curse word. All of this leads me to actually taking the Lord's name in vain because what that means -- in vain -- is what I felt right after I watched this video about disabled children in Russia.

Jesus Christ! I said, and it's definitely in vain because these things are happening every single day and no greater power seems to be in power. In fact, it's difficult to not feel cynical and powerless, to not want to retreat into a cave, close yourself off. God works in mysterious ways, be damned. What can we possibly do to alleviate all of this suffering? Yes, this particular video hit particularly hard for obvious reasons. Not only is it horrifying, but it gives me perspective on my own relatively sumptuous life, and that perspective, however hard won, has been buried under a bunch of woe of late. I've always struggled with relativity -- yes, it's all relative, but then it's not. Suffering is in degrees, if you feel it as so, and my suffering -- hell, Sophie's suffering, is relatively miniscule compared to these children and young adults in Russia in the year of our Lord 2014.

Good god almighty! Jesus Christ!

I'm taking the Lord's name in vain, over and over and over.

Oliver asked me the other day whether I believe in hell. I told him that I did believe in hell but not as a place or a time or something fixed. There is hell all around you, I told him. As there is heaven. I told him I actually believed the words of Jesus Christ when He apparently said, The kingdom of God is at hand. I believe that to mean that it's here and now, the present moment -- the kingdom of God. At hand. Here. Now. The present moment. And hell? Apparently, it's in Russia at institutions for the disabled.




Sunday, September 21, 2014

Tumblr -- and there's no "e"



If you're bored, check out my Tumblr account -- I'm having such a good time putting things up there. I highly recommend opening one and using that space for all those photos and quotes and videos and such that you might want to remember. It's simple to do so and easy to streamline, maybe a time suck but maybe not. You can follow as many or as few people as you'd like. I'm not really using it as social media per se -- more as a place to curate things that I like or things that inspire me or things that amuse me. I'm probably woefully out of date and touch with this, but I don't care.

Here's the link to mine: www.elizabethaquino.tumblr.com

Saturday, September 20, 2014

Give me a home

Museum of Natural History, Los Angeles
September 19. 2014


where the buffalo roam, and the deer and the antelope play. I don't have much to say or write unless you want me to regale you with tales of lost love, ships that I'm waiting on or waiting to recognize because they're already docked. I went to a yoga class this morning and breathed in better than out which if all were metaphor, suggests I don't let things go or I can fill up but not empty. It was a good class. The Brothers and I cleaned out the porch, organized an incredible amount of shit into garbage bags to dispose and boxes to donate. We yelled a lot, too -- at one another. Are you from a passionate family? I drove to El Segundo in the afternoon, the place, now, where Henry practices club lacrosse. It might be one of the ugliest places in southern California which is saying a lot, because our weather might be beautiful, but there are places here that you wouldn't be proud of claiming as your home. LA is a biiiiiiiiiiiiiiiig city, my father said once when he visited years ago, and he didn't mean it in any nice way. It might be his version of my It's a big world. Are you from an ironic and passionate family? This practice was for box lacrosse which is entirely different than regular lacrosse, but it's good for practicing control of your stick and footwork. So I've been told. The Brothers tell me a lot of things of late, and they're very sure of themselves. Regular mansplainers in the making. Just the other day, I was chastised in the car for listening to bad music which happened to be Patty Griffin, and Oliver switched to radio and went into a paroxysm of joy when some Journey song came on. I hated Journey when I was young, and I really hate it now, but watching my thirteen year old -- let's be honest -- geek out, playing air guitar, pretend drum and wailing about a small town girl was just a teensy tinesy bit horrifying. I looked straight ahead, where the buffalo roam and the deer and the antelope play. Where seldom is heard, a discouraging word and the sky is not cloudy all day.

Friday, September 19, 2014

The House That Jack Built




This is the girl whose brain loves to seize.

This is the doctor who ordered an EEG
for the girl whose brain loves to seize.

This is the company who took the paper
from the doctor who ordered an EEG
for the girl whose brain loves to seize.

This is the company that denied the paper
from the company who took the paper
from the doctor who ordered an EEG
for the girl whose brain loves to seize.

This is the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

This is the mother who received the paper
from the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

This is the clerk who listened to the mother
who received the paper
from the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

This is the other clerk who listened to the clerk
who listened to the mother
who received the paper
from the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

This is the mother all forlorn
who listened to the other clerk who listened to the clerk
who listened to the mother
who received the paper
from the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.

This is the place that comforts with laughter
the mother all forlorn
who listened to the other clerk who listened to the clerk
who listened to the mother
who received the paper
from the clerk who sent the paper
from the company who denied the paper
from the company who took the paper
from the doctor who ordered the EEG
for the girl whose brain loves to seize.



Umbrian Angel



I landed up going alone last night to see La Dolce Vita, even after asking at least ten people to go, including the person with whom I saw it first about thirty years ago. I'm a big solo movie-goer, often preferring it to having company. That's mainly because after a movie, a really good movie, I don't want to hear anyone talk but would rather sit under the spell of it all. But I didn't want to go to this one alone, felt sad in the going and when I sat down in my seat, next to a young man with ripped-up jeans who was sitting in my seat and who moved when I told him, I felt a tiny bit irritated. He had weird breath and said incoherent things. He spoke aloud even as the opening credits rolled. He knew nothing about Fellini, laughed and asked what language is this? before he settled in his seat. I imagined the glorious and wild opening scene of Jesus floating through the air, hanging from helicopters, the waving rooftop girls in bikinis and the gorgeous Marcello and Paparazzo gesticulating to them finally silenced this guy, because that opening stunned me into thinking that maybe I'd never seen this movie on the big screen after all. The entire rest of the movie I kept thinking that, too, because how could I have lived this long and not remembered the nearly bodily sensations of joy and humor and disgust that I felt last night in my solo seat? The guy next to me pulled a quart of juice out of his backpack, noisily slurped it throughout the first hour and then finally muttered I don't understand what's going on in this movie!, got up, stumbled over us and left. I breathed an audible sigh of relief, the guy on the other side of me whispered, Was he on something or what? and then he sighed and I relaxed into the rest of the movie and relative oblivion. I'm not going to review the movie because, really, why bother? I don't know whether it was the giant screen or whether I am old now, older than when I first watched it, but dear god -- what a movie. I am prone to hyperbole, true, but this time it decimated me. I wrote as much to the person who I had seen it with thirty years ago -- then I cried all the way home. A very different experience when the screen is so big and you're 51 years old. I was decimated. 

But the Umbrian angel Paola still smiles, my friend replied.

Yes. The Umbrian angel still smiles.


Thursday, September 18, 2014

Solving the World's Problems -- After School




So, I feel like I have to mark this afternoon in some way because The Brothers managed to get through a just-home-from-school hour without arguing about something or another. Oliver was busy making cookies for his friend who traded a few Dodgers Bobbleheads for them when Henry came in. Henry asked him to make extra, and Oliver told him there wasn't enough and they didn't come to blows, nor did Henry mock his brother's money-making expertise or Dodger fanaticism or Oliver his brother's lack of money-making abilities or alarming ability to "misplace" the money he has. Ahem. To his credit, Henry refrained from using his size and strength and poured himself a giant bowl of cereal while Oliver chattered incessantly, as he is wont, and continued to scoop the batter that he made himself.  I hovered in the hallway, the syringe of Sophie's cannabis oil in my hand, and overheard them discussing racism and what it means when you high-five someone and say Here's to being Jews! even when you're Jewish (Oliver thinks this is annoying and wonders what people would think if he said, Here's to being white! in a room that included black people). Henry said, You better be careful, dummy, and walked over to the cabinet, grabbed a bag of chocolate chips and started to eat them by the handful. That's just gross, Oliver said, and I commented on Henry's appetite as being similar to an animal's grazing. You're like some kind of beautiful zebra, Oliver stated as I moved down the hallway to give Sophie her medicine, and he wasn't talking about me. Henry came out of his room a little later and said quite solemnly to me, This ISIS stuff is so scary, Mom, and he lay his head on my shoulder, and I patted his back. What's happened now? Oliver shouted from the kitchen, and Henry said, Nothing, just the usual, and refrained from explicating because he knows how anxious and sensitive his brother can get.

It's sort of amazing what a day of temperate weather can do to the nerves around here. I'm on an even keel, too -- even after just overhearing Oliver shout we just need to cut their weiners off, and Henry, That's just dumb.

Thoughts of the Day and a Photo of Marcello***





When I opened my back door this morning to let the dog out, I was surprised to feel that the impossible heat had broken. I could almost hear the cogs of my little brain working, freed from the apocalyptic stasis of the past few days. I might even cook tonight.

Wasn't it just a short time ago that the NFL thought that the admission of gay players into its hallowed, manly ranks would bring it down? I hear the tinny sounds of dirt hitting a coffin, a grave being dug, and I can't help but think hmmmmmmm.

My friend Jeneva Stone, the brilliant writer, poet, advocate and mother of a severely disabled young man, wrote a post on her blog the other day that is living inside me. You should hop over and read it at Busily Seeking 2.0.  Oh, it has nothing to do with football.

Jeneva's post made me sit up in my own bed where I'd been lying, yellow wallpaper in my mind. I am strengthened, galvanized. I was also made whole by the incredibly generous favor from my friend Cara. I can't reveal what it was, but it came along with a tub of Lalicious Sugar Kiss Extraordinary Whipped Sugar Scrub that I dragged myself out of bed for, took a shower and slathered all over my body. When I slipped into bed, I was reminded, again, of how small the measures are that one must take to feel replenished.

Absent anything interesting to binge on as far as television, I've been on a bit of a reading frenzy. I finished Anthony Doerr's All the Light We Cannot See, and am making my delighted way through We Are Not Ourselves by Matthew Thomas. Next up is Tana French's In the Woods, a genre that I generally don't like but recommended by my friend Vesuvius whose taste is impeccable and for whom, despite our age difference, I aspire to be more like. This morning I discovered newly crowned MacArthur poet Terrance Hayes' poetry and can't wait to read more of it.

Christy Shake, a beautiful writer and advocate, my soul sister in Maine, has been making THCa oil to give to her son Calvin whose seizure disorder is as devastating as Sophie's. She wrote a letter to her doctors this morning that ya'll should read, too. Here it is: Dear Docs: Calvin and Cannabis.

It's amazing what a bit of cool air, literature, poetry, feminism, NFL-bashing and freedom from seizures can do to one's little brain, isn't it?








***I'm going to see La Dolce Vita tonight on the big screen for the first time since college. I am so excited I can hardly bear it.

Wednesday, September 17, 2014

Cannabis Oil Questions Answered, #4


video



What are the side effects of cannabis on Sophie?


I have no idea whether that video will actually work, but it's of Sophie at school yesterday, smiling as she bounces on a giant ball. She smiles more and more often these days, and I am guilty of not celebrating that enough. Since she's been on Charlotte's Web, her seizures have not only been reduced dramatically, but she smiles more. The smile is a genuine one of pleasure -- even mirth -- and is not related to feeling "high," although even if she were high (impossible with Charlotte's Web), I wouldn't mind. It's funny what scares people, what throws them off, and certainly the psychoactive part of marijuana is what is causing the greatest uproar in our country. While this isn't an issue with Charlotte's Web and other high ratio cannabis strains, the fact that people are worried about someone like Sophie possibly getting a little high, frankly, cracks me up.  I've been doing this a long time -- watching constant seizures, spending thousands and thousands of dollars on drugs for those seizures, drugs that I have injected into, squirted down and even forced into Sophie over two decades. I've also watched her have the most debilitating side effects that you can imagine: screaming for hours on end (called irritability on package inserts or you just have to see what your tolerance is, said the  neurologist early on in our journey), agitation, constipation, constant moaning and rocking, dehydration, anorexia, sleeplessness (we probably didn't sleep more than 2-4 hours in a stretch for the first eight or so years of Sophie's life), rashes, fevers, extreme hunger, impacted stool (from the ketogenic diet), dizziness, lethargy, headaches, nausea/retching, extreme drooling, and the mother of all side effects: INCREASED SEIZURES OR NEW TYPES OF SEIZURES! However anecdotal (and Lord knows, we hate the anecdotal!), it's my firm belief that some of those twenty-two drugs we tried taught Sophie's brain to seize in different ways, sometimes in worse ways -- a sort of circumvention that her brain, ever more clever than the drugs, managed.

Other than some initial drowsiness that we noticed in the first few months of her trial of Charlotte's Web, which we realized is the result of being on a benzo, we haven't noticed any significant side effects other than positive ones, like better sleep, a heightened awareness, alertness and attempts to vocalize. While there are some reports of children and young adults trying cannabis and seeing very little change or not being able to tolerate it, from what I've read and experienced in talking to many, many people, is that our positive side effects are quite common. Sophie is smiling more often and more purposefully for the first time in well over a decade. It's easily the best side effect of medicine that we've ever experienced!








Other Cannabis Oil Questions Answered:

# One
# Two
# Three

Tuesday, September 16, 2014

DIY EEG

Alley behind Trader Joe's, La Brea

After delivering the lecture to end all lectures about everything I do for you, realizing all the while that when it's over 100 degrees outside, we're all a little irritable and therefore maybe I should just shut up, I ran out of the house and into my sexy Mazda and made a run to Trader Joe's where I bought what they all godd**n needed, and when I was paying, the cashier picked up the dark chocolate bar with hazelnuts and suggested that next time I make a cup of coffee, I should drop in a square of that chocolate and stir it around. Do it yourself, Mocha! he winked and he smiled and I smiled and then I took the alley way home and snapped that photo of a seemingly abandoned wheelchair facing what looked to be an artfully decorated junkyard. For a split heatstroke second I considered lifting it into the back of my car and bringing it home. Velcro straps, I thought, maybe a good cleaning? and then I came to my senses and pulled over only to take a photo, noticed the elephant roaring behind it all, thought about elephants in the middle of rooms, the unbloggable, long memories. Earlier today I was talking to my friend Jenny who asked how the EEG went last week, and I told her that due to the usual clusterfuck of insurance issues, we had to put it off. I was supposed to call the insurance company yesterday and request that they make it an exception and put the provider in-network. I was supposed to call the nice person who read my blog the other day when I talked about this, who happens to work for an EEG company and perhaps could help me. I was supposed to do both those things, but I let Monday pass, given the heat because I just couldn't do it, didn't have the patience or strength.and I let today pass given the heat because I just couldn't do it, didn't have the patience or strength, so I told my friend Jenny that perhaps I should do the EEG myself!  I screamed, A DIY EEG! and we continued to laugh. So, there's plenty of laughter, albeit the heatstroke kind, delirium from being too hot, but not the right kind of hot, elephants in the middle of rooms, wheelchairs in alleys and do-it-yourself EEGs.

There's still nothing to talk about but the heat


105 degrees and not even noon

Global warming, schmobal warming, saith the right wing pundits.

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