Free Cannabis Treatment for a Year

I'm really not kidding you. The wonderful people making the documentary The Green Standard, whom I've already told you about, have added a perk to their current indigogo campaign. Here's what they say about it:

Anyone who contributes to The Green Standard’s campaign is eligible to nominate themselves or a friend or family member in-need to receive up to a year of CBD treatments for FREE.  We are very excited to  be launching this first-of-its-kind giveaway, and we will be selecting a winner whether or not we reach our documentary’s funding goal by the October 10th deadline.

Pretty wonderful, right? Go to the campaign to get the details. And watch the trailer. 

The Green Standard

***Oh, and don't nominate me. I'm not receiving anything in return for helping these guys to make this promising documentary, but I absolutely do not want to be in the running for this. The universe has been abundant for me and for Sophie with Charlotte's Web. Let the abundance be shared!

Interior

As I loaded my car with a bunch of crap from Target today, I had one of those bourgeois moments of despair. I'm not going to elaborate because it's been done before, and it bores me probably more than it would bore you. It had something to do with the plastic bottle of environmental clothes detergent and the California drought, the quandary of two decades of diaper wipes on Sophie's skin, a bag of French onion bread flavored potato chips. You know what I'm talking about, right? This blog is nothing but an endless conversation, isn't it? The other day, I had a long-distance healing from a famous healer. I have done these things on and off for a long time, and I believe in them to the extent that I believe my purchase of environmental detergent is going to make a dent in the ocean of sulfates that our species has been bathed. I open my heart to it as much as I do to the hope that the several hundred dollars I made recently doing a small project for a friend is going to tide me over until something else comes along. Dig a new hole and then fill it up. The healer was funny and sweet and had some incisive comments and advice. She said a bit of mumbo jumbo about gratitude and vibrations of abundance, but she also spoke about the word please and how it doesn't work in prayer. She said beautiful things about forgiveness and gave me an exercise to do that involves letters to those I need most to forgive. When you're in the emotional basement, she said, bring it to the ceiling. That makes me think of balloons, somehow, and the way they bob and float around a house for days.

Don't think about what you don't have. Think about what you desire.

Cannabis Oil Questions, Answered #5

I just got my doctor to recommend CBD oil for my child that suffers from epilepsy. Does anyone know where I can get CBD oil today? 

That was actually a question posed today on one of the closed Facebook groups that I surf around on periodically. These groups have been a wonderful resource and community and stop short of being overwhelming, mainly because they're new and the threads are short and the members are all incredibly warm and friendly and open in sharing their experiences and knowledge. Back in the dark ages, when the internet was just beginning to emerge as a lifeline for those of us in the disability community, I would sign up for these things called chat groups and listservs on major epilepsy sites. You could pose a question and get an answer -- or five thousand answers -- and each would lead you down a tiny rabbit hole that led to a dark warren where gigantic rabbits with whiskers and red eyes would sit twitching. At least that was my experience. Eventually, I quit asking questions in chat rooms or listservs (why was there never an e at the end of that word?) and climbed up out of the ground and into the sunlight where I foraged around in doctors' gardens, stealing their vegetables, dodging bullets and withstanding the occasional rake to my head. If you fast forward seventeen or eighteen years, when I got serious about trying to find some medical marijuana for Sophie, I went at it pretty skeptically, my sense of urgency muted both by necessity (hopes dashed) and experience (feeling frantic and doing things frantically almost never works). Despite the necessity and experience, though, it was a damn slog that you've read about here, ad nauseum. Here's the thing, though: Sophie got Charlotte's Web in late December, and by January her seizures were dramatically reduced -- that's nearly nine months ago. In those nine months, several very cool Facebook closed groups have popped up with thousands of very cool individuals posting questions daily, looking for information. They get answers. There don't seem to be any rabbit holes, either. The fact that someone can ask the question above using the word today and get an answer, maybe even a product, is an amazing, wondrous thing. 

Honestly, this old bunny feels like there's hope, still, in ordinary people living extraordinary lives being able to make change without power or influence or vast amounts of cash.

It's only been nine months that this old bunny pioneer has turned to historian!

As for an answer to that question, there were several. Things are happening and happening fast. Email me, go to Realm of Caring or join one of the closed Facebook groups. I promise there are no twitchy, red-eyed rabbits down dark holes anymore.


Other Cannabis Oil Questions Answered

# One
# Two
# Three
# Four

Housekeeping

Grant Park, Chicago

I'm back and have hit the ground running. This morning, Henry observed that I was a tad obsessive about cleaning the kitchen, Mom. He and I are up first every morning because he goes to school in the deep, dark Valley, and we need much preparation before our journey. I was spraying the microwave down and then the cupboard doors before moving on to using the stainless steel spray on the fridge door. Watch that pile! I might have cried out as Henry walked over to the counter to get a spoon for his gigantic bowl of cereal that fortifies him for the journey ahead. He was about to kick the stuff that I'd swept up, the detritus of a weekend without me. Jeez, Mom, he said between mouthfuls, as I wiped at the newspaper smudges all over the door molding. I'm not upset, I said. I'm cleaning for my own sake. Because that's how I like it.  My days of resentment have cleared away for the most part. It took many years to get that way, but I'm, if not proud then relieved, to feel diligent more than aggrieved, content by my actions more than enraged by the lack of theirs. At worst, I feel slightly superior. Henry downed a glass of milk and got up to go finish his toilette and pack his provisions for the journey. I wonder how long I could go without cleaning anything around me, he said. Maybe two weeks? Or three? He was, if nothing else, equally as self-satisfied as I.

Dispatch from Chicago O'Hare

I'm in the Chicago airport. I've had a wonderful weekend with two friends from college. I've been here for five hours -- in this airport -- waiting for a plane to take me back to LAX. I've had lunch. I've walked back and forth through the tunnel connecting Terminal B and C. It's maybe cooly futuristic and maybe anesthetizing in the worst way. I've had popcorn. I've had a scoop of coffee ice-cream. I've had a foot massage in a weird little airport spa. The masseur was an enormous Michael Jordan lookalike, which might have been exciting were it not for my slightly unshaved legs. I've had a beer in a bar. Evidently,  there's a football game that I'm ignoring. I hate football. I've been reading. I read this in the wonderful novel "We Are Not Ourselves" by Matthew Thomas:

Life, she thought, was like that sometimes; for years, things were a certain way, and then, in an instant, almost without conscious thought, they weren't that way any longer, as if all the hidden pressure on their having been the way they'd been had found release through a necessary valve.

Evidently our plane is leaving within the hour. So it goes.

Jumping into (again) the vaccination fray (at the edges)

Last March, I wrote a post that I titled Why I Am Not Irresponsible, A Jerk, A Moron, A Fucker, An Anti-Vaxxer Worthy of Your Contempt with an Addendum. You can read it here. Other than a post that I wrote about six years ago that I titled Big Guns (which was about some new seizure medication we were going to try, but you know all the gun nuts were googling that term), the vaccination post has received the most hits -- thousands and thousands of them. I wrote then that I wouldn't ever write about the subject again, but here I am with a bit more to discuss, prompted not only by the latest tiresome admonition from a Facebook friend and her friends to vaccinate your kids, damn it! based on a cheesy article in The Hollywood Reporter, but mainly to discuss a Medscape article that appeared in my email this morning. The title of the article is Most Vaccination-Onset Epilepsy Has Genetic, Structural Cause.  Unless you're lucky enough to have a Medscape account (reserved for those of us who hold out hope that we'll discover the reasons for why our children seize or develop any number of horrifying diseases by staying on top of things), you might not be able to read the entire article, but the gist of it is basically in the following two paragraphs:

In most children whose epilepsy started following a standard vaccination, there's a genetic or structural cause, and about a third of cases of epilepsy triggered by a vaccine are relatively benign, a new study suggests.

These results indicate that vaccination-related epilepsy doesn't necessarily have a poor prognosis, said lead author Nienke Verbeek, MD, clinical geneticist, Department of Medical Genetics, Division of Biomedical Genetics, University Medical Centre Utrecht, the Netherlands.

The findings, added Dr. Verbeek, should come as a relief to clinicians and parents and increase their confidence in vaccination.

I found the rest of the article interesting and compelling because it addresses something other than the autism/vaccination clusterfuck -- namely, that vaccinations do carry risk, particularly if a genetic/structural abnormality exists. While the article might be reassuring to some (and I believe that was its intent), I can't help but wince at phrases like relatively benign and doesn't necessarily have a poor prognosis for obvious reasons. I balked at the explanation that a child who began to seize after vaccination would have begun seizing anyway, if he has a congenital abnormality or genetic predisposition to do so. There's something casual about the language that terrifies me, perhaps triggers some deep, learned response to trauma and the disconnect I felt very early on from the people in positions of power. There is no discussion of those whose seizures are not relatively benign or those whose prognosis is necessarily poor.

In an argument I got into most recently on a friend's Facebook thread, I was accused of "seeing only what I wanted to see." This person also took offense to my admittance that I wasn't entirely trustful in Science and the Powers That Be. She said, and I quote directly, When I make medical and safety decisions for my children I ONLY want science and academia informing those decisions. Let's face it -- about then I cracked up with both laughter and residual insanity from two decades of dealing with science and academia. I think I might have flippantly told her that I envied her faith because it implied she had never had it tested. My feelings about Science with a capital S have evolved over time, and trust me when I say that it's not a great lesson to have "learned." I guess you could compare it to the statements that very old and wise people make about how the older they get, the more they realize that they don't know shit. I imagine that many of us who have struggled with the medical system and how it treats and studies chronic illness have the same reservations, and I'm not sure if that will ever change in spite of Medscape's earnest attempts to do otherwise.

When I right myself from the intial reaction after reading the Medscape article and study, though, I have some questions. One of these is: What if we had known that Sophie had a congenital abnormality or genetic condition that predisposed her to seizures, so we waited to give her vaccinations in the hope that she might get a bit more development under her proverbial belt before the odyssey of drugs and seizures that would hypothetically be her future? The earlier seizures begin, the poorer the prognosis for development -- for obvious reasons. Children who develop infantile spasms at a later age than Sophie (three months), who have already learned to walk, let's say, or even to say words, can sometimes retain those abilities, particularly when their seizures are controlled. If a three month old baby's brain was given a break from medications and seizures at such a young age, when it eventually did seize, would the parts of it unaffected by prenatal insult be in a better position to compensate for the insult? The brain is elastic, after all.

I'm getting tired here, of typing. This subject always makes me feel physically ill, to tell you the truth. I took a break to speak with a friend who is exploring the use of cannabis for her own 15 year old son who suffers from epilepsy and cardiac issues. She lives in a state where it's illegal, and she's not getting any support from her neurologist, so I'm telling her everything I know, all the anecdotal evidence I have that Sophie's seizures have dropped nearly 95% since she began taking CBD. I wonder if some professional from the land of Science is out there, taking notes.

***Just in case you get your panties into a giant wad on the top of your head or around your neck, I'm slowly vaccinating my sons. I am -- I repeat -- NOT anti-vaccination, but I am -- I repeat -- emphatically dubious that Science has all the answers.

Gross Mom

Cesaria Evora

I think there are a bunch of blogs with titles like Gross Mom. I've seen Ugly Mommy, Vodka Mommy, Bad Mommy -- the list goes on, and they always sort of irritate me. I can't stand the word mommy unless it's used by a child toward his (or her) mother. I don't like to be called by any word that stands for mother by anyone, really, than my own children. That would include nurses and doctors and particularly young men or grown men when they use the word mama for me. You know who you are. Humor my little pet peeve, won't you? And I actually love being called baby by the right person. You know who you are, too. None of this sounds very pleasant when I read over it, and I really only wanted to tell you a funny little story that happened yesterday when Oliver and I were in the car driving about the city as we do. Given the fact that I'm sort of a Loser Mom, I had hooked up Pandora (evidently only losers listen to Pandora) and was listening happily to my Cesaria Evora station which included not only her magnificent music but other Latin American songs and instrumentation. What IS this? Oliver asked in his most annoyed thirteen year old voice. No matter that he is prone to fits of embarrassing air guitar to the excruciating sounds of Journey and Boston. I said, It's Cesaria Evora in a pleasant and indifferent tone. Do you even know what she's saying, Mom? Oliver asked. Not really, I answered, but it doesn't matter because she is amazing. Oliver probably rolled his eyes, although I wouldn't know because I was driving and I'm also a Loser Mom Driver. Why do you even like her? he asked. I love this music, I said. It's sexy. You can only imagine the reaction. Gross, Mom! That's just gross! he shouted.

I turned the music up and said, There's nothing wrong with that, baby!

About the City on Monday and Tuesday

Sophie playing with a hairbrush while waiting for the doctor.

Oliver just being Oliver.

A blooming bottle brush tree bloom:

A homeless guy camped out in front of a church door:

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.

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.

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

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.

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.

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.

Cannabis Oil Questions Answered, #4

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

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.

There's really nothing to talk about but the heat

Holy shit, right?

The Green Standard by William Rosenfeld and Jacob Strunk

Help make it happen

for THE GREEN STANDARD and the team!

Not only will we take viewers inside the world of legal marijuana farming and sale, but we will also take an unflinching look at how years of criminalization continue to shape our society – from the patient and provider to the policeman and prisoner. 

via The Green Standard

You don't need me to tell you that the world has seemingly gone mad of late, or madder than usual. I slink around my life looking in corners but not around the bend. I've been waiting for fortune cookie messages to materialize, for a ship to come in or at least pull into port for a spell. I'm waiting on something to inspire me, something to which I can give of myself. My cup runneth over. There are threads on Facebook, on the private closed cannabis groups that spew venom and politics. It doesn't make me crazy, but it makes me tired. I'm a tad tired. Bill Rosenfeld contacted me the other day, though, with energy in his voice. He and a colleague are making a small film, a documentary that might be a big film. Our connections were weird. A friend in the movie industry, a person in Pennsylvania, someone else who reads my blog -- The world is small. I told him that I'd help him to spread the word. So, here's the word. I hope you'll contribute to his campaign in some small way. If you can, do it big. I think what I meant to say is that the world is mad but it's also quite quiet, plodding along in goodness, too.





Here's the link to the campaign and to read more about The Green Standard.

Friendship

In a circle of true Friends each man is simply what he is: stands for nothing but himself. No one cares twopence about anyone else’s family, profession, class, income, race, or previous history. Of course you will get to know about most of these in the end. But casually. They will come out bit by bit, to furnish an illustration or an analogy, to serve as pegs for an anecdote; never for their own sake. That is the kingliness of Friendship. We meet like sovereign princes of independent states, abroad, on neutral ground, freed from our contexts. This love (essentially) ignores not only our physical bodies but that whole embodiment which consists of our family, job, past and connections. At home, besides being Peter or Jane, we also bear a general character; husband or wife, brother or sister, chief, colleague, or subordinate. Not among our Friends. It is an affair of disentangled, or stripped, minds. Eros will have naked bodies; Friendship naked personalities. Hence (if you will not misunderstand me) the exquisite arbitrariness and irresponsibility of this love. I have no duty to be anyone’s Friend and no man in the world has a duty to be mine. No claims, no shadow of necessity. Friendship is unnecessary, like philosophy, like art, like the universe itself... It has no survival value; rather it is one of those things which gave value to survival.

C,S, Lewis, The Four Loves 

via Brain Pickings 

Last night, I had the last of my extended birthday celebrations on the top of the Hotel Wilshire in mid-city. A few of my dearest friends met me at this funky, little rooftop bar and restaurant where we might have been the grannies of most of the people there. 

As you can see, a teeny tiny little square pool sat in the middle, and when we arrived several tattooed and bikinied gals were casually sipping on their fancy cocktails, looking exactly like a live Barbie Pool set-up. Dang! I should have brought my bathing suit! I said to my friends and felt a frisson of fear at the prospect. We ordered drinks. I had some concoction of gin and elderflower liqueur, lime juice and soda that gave me a perfect buzz after about five sips. We ordered appetizers and sat around the table for hours, discussing everything from breasts to men, laughing most of the time. Somewhere in there, I also had a mule made with lime, ginger beer and vodka -- it wasn't a Moscow Mule, but it was even more delicious. I opened ridiculously fine presents -- a Kantha, an antique bowl and goodies for the bath, and we finished with peanut butter and jelly beignets and strawberry shortcake. By that time, the Barbies had left, the hipsters had taken over and we rode the elevator back down to the street and went back home. I would be lost without these women friends -- the ones that I was lucky to have with me last night and the scattering rest of them, really, all over the world. Thank you, ladies. We do, indeed, have an affair of disentangled, or stripped, minds.

Saturday Three Line Movie Review

The Trip to Italy
dir. Michael Winterbottom


Two handsome in the way that I like middle-aged men go on a culinary tour of Italy, retracing the steps of the Romantic poets, namely Lord Byron, keeping up a steady stream of witty banter and driving along the requisite Italian roads with breathtaking views of the Mediterranean . They do brilliant improvisations of famous actors while bemoaning their own advancing age, receive the exquisite offerings of food brought to them in perfect Italian restaurants, converse with their families back home and people they meet on the road, conveying in a charming and poignant, utterly original way what longing means -- even what it means to be human. I floated out of the movie to strains of Italian opera and am now officially completely smitten by Steve Coogan.











Other Three Line Movie Reviews


Get On Up
Begin Again
Chef
The Immigrant
Cesar Chavez
The Grand Budapest Hotel
Gloria
Labor Day 
Philomena

August: Osage County

Her

American Hustle

How We Do It: Part XLVIII

It gets better.

Me

Sophie was scheduled for an ambulatory EEG this afternoon at 3:00. It's been on the books for about a month, but I haven't been thinking about it because I hate the whole process. The ambulatory part is a godsend -- no hospital! -- but there are all the leads, the stinking glue, Sophie's curly, curly hair, the clean-up, the smell and, of course, the significance. Sophie has always had an abysmal EEG -- the kind of EEG that is, frankly, pretty hopeless. She's probably had at least ten in the last nineteen years, most of them in-hospital. Every single one is wildly abnormal. I won't give you the jargon. She hasn't had one in three years, though, and we thought it was time, particularly given the dramatic reduction in her clinical seizures since we started giving her cannabis oil. Yesterday afternoon the lab called to say that the insurance company claimed Sophie wasn't a member, so I went into my clipped and efficient mode and got that ironed out (our id number was transcribed wrong). This morning, I got a call from the EEG lab with the news that they are Out-of-Network for HealthNet and that we would be subject to the 50/50 rule after the insurance company pays the usual and customary rate. How much is that?, I asked. The financial person told me that, historically, insurance companies have determined the cost to be around $120, so I would be reimbursed for 1/2 that or $60. How much is the EEG? I asked. She said, Around $1700 or so. There is no other ambulatory EEG facility in the area, and MediCal is not contracted with them either. My options at this point are to admit Sophie to the hospital for an overnight EEG (out of the question), pony up and pay (the usual choice that has strained our finances for nearly twenty years), or appeal to HealthNet and request that they pay the in-network rate (throw my head back and laugh maniacally). Reader, if you're still here, please scroll up to the video that I posted at the top and forward to :23 seconds, maybe one of my favorite scenes in the movie, when Benjamin tells his parents that he's getting married, and Mrs. Braddock throws her head back and screams the most fantastic laugh you'll ever see on film. I am Mrs. Braddock, and that's what I do in my mind whenever I have situations like this EEG one. I no longer feel stressed, to tell you the truth. What might have caused me to weep copious tears, to tear at my hair, literally, to feel the poison of anger and adrenaline coursing through my veins, has disappeared. Mrs. Braddock enters my mind, and I throw back my head and let out a screaming laugh. After nineteen years, I'm here to tell you that it gets better. That's how I do it.

The Landlocked Life

Weeki Wachi Springs

This morning I met Moye at a neighborhood pastry place for a belated birthday breakfast. She stuck a candle in the bunch of hair that I had pinned to the top of my head, and then we lit it and I burst into flames and disappeared. Just kidding. Well, that wasn't funny, really. We actually sat down and drank delicious coffee, ate this incredible concoction of bread, exotic sauteed mushrooms and eggs and shared some divine confection -- a cannelle, I think it was, all crispy caramelized on the outside and eggy soft in the center. We talked about our children and shared some memories of our high school years (we grew up together in Atlanta!) and we laughed together like we always do. She gave me a beautiful bracelet/necklace that I promptly wrapped around my wrist and a wonderful little book of poetry called Poems of the American South from the Everyman's Library Pocket Poets series. She wrote a beautiful inscription inside in her inimitable gorgeous handwriting, drawing my attention to the poems inside that include mermaids, Tar Heels and tender mercies. Thank you, Moye, for your years of friendship, for your sense of humor, your support, your beauty and your inspired art.


September 11th is always a sombre day -- isn't it? Our minds inevitably go back to where we were and how we heard and how we led our lives in those days following. There's a tyranny to sorrow, isn't there? What we are almost required to feel or remember? I'm always struck, on this day, by the strange paradox of the Never Forget communal imperative juxtaposed with the get over it mentality we place on individual loss. It's something I think about, particularly in regard to my friends who've lost a child or suffered some other big loss. There's a tyranny to sorrow, isn't there -- or at least a manufactured order to it.

I was going to post a poem on this somber day of Adam Zagajewski's -- a poem that I've posted before that I think is entirely appropriate, but instead I'll give you the link and post the mermaid poem from the book that Moye gave me.

It's all we can do, really.

Try to Praise the Mutilated World by Adam Zagajewski



My First Mermaid

I
In Florida, where these things happen,
we stopped at the last roadside attraction.

In a small theater decorated with mold,
behind a curtain sagging like seaweed,

a wall of glass held back a wall of water.
And there, in the springs, a woman in a bikini top

and Lycra fish tail held an air hose to her lips
like a microphone. What was she waiting for?

Into the great open bowl of the springs
a few fish drifted. They looked at the two of us.

They shook their heads and their bodies rippled.
Air bubbles shimmered in the filtered sun,

each a silver O racing to the surface to break.
We'd missed the day an unscripted underwater blimp

of a manatee wobbled into view. The gray, whiskered lard
of a sea cow or the young woman who sang --

lip-synched, rather -- some forgettable song,
her lipstick waterproof: which was the real mermaid?

II.
Given the weight of the water, nothing happens fast
to a mermaid, whether it's love or loss.

Not like the landlocked life, I wanted to warn her.
But here came a prince in street clothes,

trying to think thoughts that were heavy enough
to make himself sink to her level. His shirt ballooned,

a man turned not to a merman but a manatee.
Yet, in the small eternity it took for him

to grasp her greasy flipper, for her to find
his more awkward human ankle, and then

for them to turn, head over each other's heels --
a ring rolling away, too beautiful to catch --

they lived happily ever after.
Until one of them had to stop for breath.

Debora Greger (1949-)

I'm not a doctor, but.

International medical guidelines recommend the use of benzodiazepines as treatment for anxiety disorders and transient insomnia, but caution that they are not meant for long-term use, and should not be taken steadily for more than three months. 

Melissa Healey, The Los Angeles Times

 September 9, 2014

This is not going to be a post where I attack the use of benzodiazepines, despite my belief that they are horrible drugs, perhaps helpful in some ways but whose drawbacks far outweigh benefits. During the last couple of days, there have been a plethora of articles about their drawbacks -- scary drawbacks -- particularly as they are often blithely prescribed to patients with not just severe epilepsy but also garden varieties of insomnia and anxiety.

This is going to be a post where I deride the position of some neurologists who are actively blocking some families' pursuit of high CBD oil to try to stop their children's refractory seizures. 

I've always hated the expression I'm not a doctor, BUT. I won't go into why I hate that expression, but I will state here that the only authority I have to "report" on the effects of benzodiazepines is the nineteen years of experience I have giving them to my daughter. At four months of age, approximately one month after she was diagnosed with infantile spasms and in the middle of unsuccessful high steroid treatments that were injected into her body, we were instructed to add nitrazepam to her regimen. Nitrazepam was only available through what's called compassionate protocol as it wasn't then approved for use by the FDA. We dutifully picked the drug up from the hospital, cut it into quarters with a pill cutter and crushed the infinitesimal piece to a powder that we dissolved in water in a baby spoon and placed in our baby's mouth. Nitrazepam helped somewhat to stifle the seizures, but it by no means stopped them completely. The side effects were drowsiness and irritability, as well as strange fevers that came and went. We added three more drugs to the regimen in the following six months and began a weaning process of the nitrazepam that landed up taking nearly two years. Sophie's seizures kept coming, and over the next ten years she'd be put on Klonopin which made her anorexic and didn't stop the seizures and then, finally, Onfi which we're in the process of weaning. At last count, we have tried 22 anti-epileptic, and none have been successful. I can honestly say that it might take years to get her off of Onfi alone, and given the six-plus years she's already been on it, I can't begin to imagine what the long-term effects of it have been, particularly when I read the articles that have been steadily coming out of late.

I've discussed ad nauseum (most recently in my mini-memoir) the moment when I knew Sophie's esteemed neurologist had no idea what was going on or how the combination of drugs she was on as a nine-month old baby were interacting. If I were Oprah, it would have been the What I know for sure moment and what I knew for sure was that the whole situation was fucked up. I'm going to use profanity there because it's entirely called for and there are no other descriptors in my mind for just how dire the situation was and continues to be for countless children with epilepsy. 

Now I'll get to the point of this post which wasn't to bash benzos but to bash those in the medical world who continue to obstruct families' pursuit of high CBD oil. I know of two instances in southern California alone where prominent neurologists have actually reported mothers I know to children's services for going against their doctor's wishes. There are countless anguished reports on social media of families butting up against their doctors regarding CBD oil despite those children being on multiple drug regimens with no relief of constant seizures. It's madness, and it makes me furious. I can't figure it out. I think about it all the time and wonder why? Is it ego? Is it hubris? Is it jealousy? Is it the way our doctors are trained? Is it our culture? Yes, I realize that "we need more studies," that research is necessary and that the traditional scientific method of testing is good practice, but what the hell?

Do you think giving my four month old baby a powerful benzodiazepine along with two other drugs was something done with confidence? Had the long-term effects of that particular combination been studied rigorously? Do you think the woman who called me the other day and told me that her kid was on five anti-epileptic drugs (three of which were only recently "approved" for use) and couldn't get her neurologist to cooperate with her wanting to try CBD is unreasonable? 

I think it's madness and is only furthering my latent animosity toward the medical world. I want to be a builder of bridges. I want to improve communication between patients and doctors. I want to help break down the disconnect, but I find it increasingly difficult to do any of these things. If I were in a more measured mood, I'd craft something more particular and to the point. Instead, I'll resort to bad language, to using the word clusterfuck, to wonder about Sophie's increased chances of Alzheimer's Disease now that she's been on mega-doses of benzos for most of her life, to wonder what that would exactly mean for a person like herself. I'm not a doctor, though. I'm a writer and a mother, and my weapons are language and love.