Wednesday, September 30, 2009

Corner View - White

This week's Corner View theme is White. Travel around the world and see other Corner Views by clicking Spaindaily.





























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Wallace Stevens is one of my favorite poets. He is difficult, but I find that just when I think I don't understand a thing, a chink falls out and I see light. Or WHITE. Here is one that, for me, carries significant meaning and memory.

In the Carolinas


The lilacs wither in the Carolinas.
Already the butterflies flutter above the cabins.
Already the new-born children interpret love
In the voices of mothers.


Timeless mothers,
How is it that your aspic nipples
For once vent honey?


The pine-tree sweetens my body,
The white iris beautifies me.


from Harmonium, 1923, 1931

Tuesday, September 29, 2009

I Wish

I do a whole lot of talking and a whole lot of writing (just sent another article off to be edited and perhaps published in a literary journal), and an even greater lot of care giving. I have a super sharp, almost painful  ability to see both sides of every coin, even when it comes to my own thoughts, I think. But lately I've just wanted to throw it all in, lie down on the bed and surrender. Give in to darkness or even let light swallow me whole. I know what I'm supposed to do and most of the time I do it, but it's really, really hard right now.

Last night, one of my oldest friends sent me this video. And what I wish is this:

I wish that I could be reborn as a surfer.
I wish that I were either completely zen-like or just plain stupid. Maybe they're the same thing. Holy fool?
I wish that I smoked a lot of pot and was relaxed.
I wish that I could wake in the morning and have nothing to do or think about but riding this wave.

Thank you, D.





Monday, September 28, 2009

Making Lemonade




I am the proud recipient, today, of the Lemonade Award, bequeathed to me by the most wonderful blogger Alicia at Welcome to My Planet.   Alicia is the wonderful mother of four girls, one of whom struggles daily with severe autism and developmental disabilities. Alicia has the dark humor so necessary to survival for some of us; her posts are always sensitive and filled with a soft yearning. Thank you, Alicia for giving me this award!


The Lemonade Award is a feel good award that honors blogs that demonstrate great attitude or gratitude. Here are the rules for accepting this award:


-Put the Lemonade logo on your blog or within your post.
-Nominate at least ten blogs with great attitude or gratitude.
-Link the nominees within your post.
-Let the nominees know they have received this award by commenting on their blog.
-Share the love and link to the person from whom you've received the award.


First all the blogs on my blogroll to the right deserve this award. As do the more than fifty other blogs that I read as often as I can that I've bookmarked! So, it's really difficult to pick ten blogs and give this award. That's why I'm going to pick two (you know how much I hate rules and authority, anyway!). Here they are:


Bless Our Hearts is truly a blog of attitude and gratitude. Each and every day, Ms. Moon, the reverend of the Church of Batshit Crazy tells us stories of her life and loved ones, including her brood of backyard chickens. She is loving when love is called for and righteously angry when that is called for, too. She just became a grandmamma this weekend, so go on over to her blog and congratulate her!


The Disabled Kid's Keeper is a blog so full of attitude that you might laugh until your face hurts. This brilliantly funny single mother of a child with severe disabilities tells it like it is, inadvertently bringing awareness to those who might otherwise not realize what it's like raising a child with disabilities. Her wicked sense of humor makes her especially dear to me and I'm so happy to have "discovered" her unique voice.

Congrats to you both and sorry for all the weird typesets on this post. Blogspot is going insane today, and driving me there as well!

Thank you, again, Alicia!






Sunday, September 27, 2009

Come for a Walk



On October 18th, we will be walking in the annual Epilepsy Freedom Walk. Our team is Team Sophalofa, named after the famous Miss Sophie. I would love for you to join us as we walk to raise awareness about this terrible disease, as we walk for freedom from seizures and freedom to succeed. It's a great event and a beautiful day. Our goal is to raise $5,0000.

If you're far away and so inclined, you can sponsor us. Here are the steps:

1. Start at the event's official website, Epilepsy Freedom Walk.
2. Click on "Donate to Support Walker/Team" (this is located on the left-hand column of the home page)
3. Under "Enter Freedom Walker's Name" type all or some of the first and last name of the Walker you would like to sponsor and click on the "Search" button. You can use my name, Elizabeth Aquino.
4. After the search is complete, click on my name. You will be directed to my personal page, but not the team page.
5.Click on "My Freedom Team Page" You will be directed to the team page.
6. Under the list of Freedom Team members, click on the "General Freedom Team Donation" link.
7. Enter a donation amount, click on the continue button and follow the prompts requesting your donor information.










Saturday, September 26, 2009

Silent Saturday





Improving Upon Silence
The most important step in developing skillful speech is to think before speaking (or writing). This is called mindfulness of speech. Few things can improve the nature of our relationships as much as the development of skillful speech. Silence offers us, and those around us, the spaciousness we need to speak more skillfully. When we speak with greater skill, our true self—our compassionate, loving self—emerges with gentle ease. So before you speak, stop, breathe, and consider if what you are about to say will improve upon the silence.
- Allan Lokos, from “Skillful Speech,” Tricycle, Winter 2008

Friday, September 25, 2009

Infantile Spasms


Characteristic EEG of a child with infantile spasms

I've gone back and forth about posting this today and that's because I want to do the public service, but I have to admit that dredging up infantile spasms awareness gives me a lot of emotional distress. Sophie was diagnosed with this rare form of epilepsy when she was three months old after previously normal development. While we have never found out the reason for the seizures, we suspected that the initial vaccinations given to Sophie approximately ten days before we noticed the spasms were, at the very least, a catalyst for what followed. You know the rest of the story, but if you don't, suffice it to say that Sophie is now fourteen years old and still seizes daily despite eighteen drugs, two rounds of the ketogenic diet, countless dietary changes, Chinese medicine, osteopathy, homeopathy and even some voodoo shit thrown in (laying on of hands, prayer circles, Reiki,  Jewish Orthodox holy men, water from Lourdes, faith healers, Benny Hinn!!!). She is a beautiful young lady, non-verbal, with eyes that speak of a bottomless intelligence despite its apparent inaccessibility.

The first drug that Sophie was put on is called ACTH, and it's administered by intra-muscular injection. By the parents. That means us. We injected the gel into our little baby's leg twice a day in a macabre ritual filled with the most desperate hope. In some cases, it can stop infantile spasms cold, but that wasn't our story. ACTH is a steroid and given in high doses can cause a lot of problems. Sophie had those problems -- her face and body broke out in a gruesome thrush infection, she screamed and cried for literally 23 out of 24 hours a day and her seizures kept coming. Halfway through the course of the drug, the company RAN OUT OF SUPPLY (I kid you not) so we had to wean her by using Prednisone. Then she developed a rare side effect of the wean called pseudo-tumor cerebri. I won't go into details but she had to have FIVE lumbar punctures to ease the swelling. She was five months old by then. And it was only the beginning.

Anyway, I was told by this blogger that Infantile Spasms Awareness Week is October 11th through the 17th. What I learned is that the big pharmaceutical company that manufactures ACTH is one of the sponsors, and that, frankly, makes me sick. I know that ACTH has helped many children combat infantile spasms, but it hasn't helped many more. In addition, the drug appears to have been jacked up in price by what seems to be thousands of dollars. Holy shit, is what I've been thinking as I scroll through Marissa's father's blog and the blogs of others that he connects to. I am many years down the road from infantile spasms as Sophie's seizures have evolved into new and different variations of that original disorder.  But, from what I can tell, treatment for this devastating disorder is very much the same as it was fifteen years ago when Sophie had it, with the possible exception of one or two drugs that have only recently been approved for use in children with infantile spasms (and were available through Canada and England back in the day).

Though not surprised, that makes me extremely sad and frustrated. And also explains why I'm sort of a raving lunatic when it comes to Big Pharm and the current way children with hard-to-control epilepsy are treated.

And like I said earlier, I'm in no emotional state to go down that path. At least not today.

Suffice it to say that Infantile Spasms Awareness Week is October 11th-17th. And this is a type epilepsy so brutal and awful that it would serve the whole world to know more about it. Especially pediatricians who don't know it well enough to diagnose it in its early stages. Especially for non-profit foundations who have the money and wherewithal to fund research projects that might advance the treatment of it. Especially the public who are as yet ignorant and unaware of how many people are affected by epilepsy in general and how many children have these difficult-to-treat seizure disorders, seizure disorders like Sophie's that have the potential to ruin lives or at least cause enough extreme havoc that one (who me?) is forever treading water, trying to keep one's head up and breathing.

That's my Friday rant. Go read the blog I told you about. Here's the link, again.

And give me a wide berth about Big Pharm and Big Insurance. Don't get me started.

Thursday, September 24, 2009

Laughter and the Proverbial Fan



The Husband continues to have some medical issues that will hopefully be resolved when he visits a neurologist on Monday (although visits to a neurologist for this family haven't turned up much, frankly). Let's hope more shit doesn't hit the fan.

Some of you have expressed that you're worried about me -- rightly so, I suppose. I know that I've dropped cryptic words and phrases here and there, and those of you who are on a similar journey probably know the signs. I'm working on it, is all I have to say. I went to another yoga class today (two times already in one week!) and felt enormous release, so that's good. Sophie did have an ugly big seizure in the car tonight, on the way to In 'N Out, and Henry had to climb into the back seat while I was driving and help to support her head because Oliver couldn't. But that started a fairly decent and open conversation with the two of them while Sophie slept, post-ictal, and I think they got some of their fears and worries voiced.

I just drove and pretended to be in control and was apparently successful because eventually we were talking about Halloween costumes and what they wanted for Christmas this year. Thank God for that.

And now the laughter: check out my new favorite blog by a woman who cares for her disabled son. Today's post made me laugh so hard that my troubles disappeared. I'm grateful for that! Click here for some dark, dark humor, served up just the way I like it.

Wednesday, September 23, 2009

Corner View Wednesday

The theme this Wednesday is "Out the Car Window." You can see Corner Views all over the world by going to Jane at Spain Daily. Click HERE.


After almost causing a few wrecks in Los Angeles city traffic, I handed the camera to my eleven year old son. He did a good job, I think, of capturing some of Los Angeles' more gritty, urban life that lies right out the car window.






This speaks for itself -- Paramount Studios, just around the corner from the boys' school.


(not sure why this appealed to him, but hey, it's a California fire hydrant)


More Paramount studios and movie trailers -- ubiquitous in our neck of the woods.



Los Angeles evidently has the most per capita burger joints in the world. And we're not talking Golden Arches -- we're talking vintage fabulous, like Astro Burgers.



What is that? Henry asked, before snapping the picture,  because it's fast becoming an anachronism -- an old public telephone that has seen better days.


a snippet of Melrose and if you look at the sign above it, I think another home foreclosure notice (sadly quite common in these abysmal economic times)

Happy Corner View!

Saturday, September 19, 2009

Illegal Immigrants -- A Story


Sophie's Saturday companion Mirtha is an amazing woman. She is short and curvy with long, black ringlety hair. She has helped me with Sophie for over five years. She is, in some respects, Sophie's best friend. She is in her mid-thirties and the mother to a fourteen year old boy and a four year old boy. While they are not married, she has lived for many years with the father of the four year old, and they work at four jobs between the two of them. Her "husband," let's call him George, has lived in the United States for seven years but is an illegal immigrant from Guatemala. Mirtha works and lives legally here but does not have a green card. She lost thousands of dollars a while back to an unscrupulous lawyer who was helping her to get a green card.

George left his job washing cars two weeks ago and was driving home to his family when he was randomly pulled by the Los Angeles Police. When the policeman asked for his license, George didn't have one, so the policeman walked back to his car and called Immigration. George was then taken to the local jail and waited a couple of days before being transported to immigration's jail. Mirtha told all of this to me last Saturday, four days after it had happened. She cried a bit but said that everyone in her church was going to try to raise money to get George a lawyer. She told me that it would probably cost between $5000-$7000. She told me that her older son was very upset about losing George, his stepfather, and couldn't stop crying. She told me that her little boy kept asking where Daddy was and when was he coming home?

I didn't know what to say. I have no money to give to her and words seemed a paltry consolation. I told her that she should bring her boys with her when she worked on Saturdays with Sophie, and she seemed grateful for that. She came this morning with her little boy who is much loved by my two big boys. I asked her how George was doing and she told me that he has been moved to immigration in Houston. He will be flown to Guatemala on Monday morning in the tee-shirt, shorts and sneakers that he was wearing the afternoon he left his job at the car wash and headed home to be with his family. He was not allowed to see his family or to take anything that he might own here back to Guatemala.

Mirtha is alone, now, a single mother with two American sons. She must work her two jobs and do without the money that her husband brought in from his two jobs. She will move out of her two bedroom apartment into something smaller that she can afford. She will hopefully find some help with her little boy so that she can continue to work to support her sons. The older boy is angry, now, unable to understand how this could happen. The little boy thinks his father has gone away to work.

George will arrive in Guatemala and begin to look for work so that he can raise the money to pay someone to get him to the United States again. He wants to be with and take care of his family. He does not want his boys to grow up without a man in the house, and he loves his wife.



Friday, September 18, 2009

Ask and Ye Shall Receive


an image from one of my favorite movies: Wim Wender's Wings of Desire

I had a conversation with Sophie's homeopath this evening. This is a man I love. Truly love. And not just because he's helped Sophie beyond measure. I love this man because his voice is gentle and he listens quietly. When I ask him a question, he answers the question. He is not emotional but there's something taut about him, willing, and open. I called him this afternoon because I'm worried, again, about Sophie. She's slumping, coming off the benefits we had seen from the remedy change we'd gotten in Arizona. She's begun to have big seizures again, weekly or even twice weekly. Her mornings are agonizing, anchored by a bout of spasms that sometimes go on for more than half an hour. She looks drawn and tired to me and I feel like she is depressed. When the Homeopath suggested another dosage, I started to cry. I whimpered, actually, pleading with him that I didn't have any hope. I might have even said something about how I think, sometimes, that it's all my fault. Before you rush to defend, imagine what it's like to feel despair when you know you must hope, to not have faith that things will get better when you know that having faith, too, is the only way to live. I wonder sometimes where I end and Sophie begins or where Sophie begins and I end. I get confused, wondering whether my own anxieties, even depression, are somehow hers as well. I waver from an instinctual feeling that this has nothing to do with you and you must help HER to this is her journey, her path and you have little control.


So, I'm crying a bit and feeling quite desperate and The Homeopath speaks quietly to me in his dulcet tone and I feel a little better. He doesn't say anything in particular but he laughs gently when I try to make a joke and it feels a bit better. He gives me the plan, which is to change the dosage of the remedy, and then I hang up. I had been watering the plants outside when I was talking to him, so I turned off the water and went back inside.

The phone rang again, and I yelled at Oliver to answer it. It was The Homeopath, again. When he talks, sometimes, there is a smile in his voice. He said, "You're not going to believe what just happened. The Doctor was in the building and is in my office right now."

What doctor? The Great Homeopath from Arizona, the one that we had visited last May (you can read about that HERE). And he happened to be just visiting today and had walked into our doctor's office right then. Evidently, the two had had a short conversation and decided that we should try a different dosage of the remedy for Sophie.

I know this all sounds crazy, but what are the chances?

I know it's a sign. A good sign.

Thursday, September 17, 2009

A Letter



Torquemada, the Grand Inquisitor




Not too long ago, before the Healthcare Wars there was a brief moment when it was The Torture Wars. And somehow, in all the recent hoopla and bullshit, that dark beast has shuffled or been pushed back to the dark recesses from whence it came. Or so I thought. Tonight, I sat on the American Airlines flight from St. Louis with my Kindle and read Andrew Sullivan's  respectful "Dear President Bush" letter, an essay of such enormous import I wanted to stand up and tell everyone on the plane, buried in their Dan Browns and James Pattersons and Sudokus to read it, read it. You must read it.

You must read it. Go buy the Atlantic Magazine and read this letter and then tell everyone you know to read it. Or read it now by clicking HERE. Challenge the people you know who believe that torture is justified when a nuclear bomb threat is hanging over the heads of the free citizens of the United States to read it. Tell those who would wish that whole dirty, ugly episode relegated to history or buried. Tell those who believe that our already fractured citizenry would never benefit from some kind of formal reckoning of this stain on our country.

I got in many an argument over torture -- over Abu Ghraib, over Guantanamo, over the amazingly craven Dick Cheney who continues, to this day, to defend some of the grossest crimes against the Constitution of the United States, against the values of all civilized nations and religions, against humanity.  Who, me? Argue about something? Come on! I argued on some blogs, I argued with my brother-in-law; I argued with my mother and my father. I admit to personally refusing to watch that tv show 24, even when some of my closest friends told me that they were hooked.

Andrew Sullivan spells it out in remarkable prose and provides one of the most amazing refutations of torture that I've ever read. And he demands that our former President own up to what has happened, even if it means further weakening the divisions in our country. Some might wonder at the hubris of a single man, a journalist, a blogger and writer, having the presumption to make these powerful demands that not even President Obama has made. I don't think it's hubris. I think it's testament to the highest ideals of  our country -- that one man, one, simple man graced with the gift of language can make an amazing appeal to his former leader, the person whom he supported and invested trust.

Go read it. Click HERE.

Tuesday, September 15, 2009

What Oliver Said


"PEACE OUT AND DEJA VU!"
(I'm not sure what that means but I like the way it sounds.)

Monday, September 14, 2009

Bird Break

Watch this cool video and turn the volume up!


Birds on the Wires from Jarbas Agnelli on Vimeo.

Taking a Break


I am leaving for St. Louis on Tuesday morning to attend a conference. I work part time as the Parent Co-Chair for a national organisation that is working on improving access and the quality of healthcare for children, particularly those with special needs.

All the sturm und drang of the last couple of days has taken any reserves that I possessed and chunked them out the window. The pen is mightier than the sword but actions speak louder than words. I'm looking forward to clean hotel sheets and a big bed that I'll sleep in by myself. And then I'll get up and start working on what's really important.

Don't go away.




Sunday, September 13, 2009

Update

I had a brief conversation with the cousin who disagreed so vehemently last night, and he apologized. I do forgive him, because at heart he is a good person who has struggled mightily with his own health. His sister has actually made great pains to engage me in the comment section, but I've deleted those comments because they are long and my replies even longer. I think that discussion would be best served by another means of communication. Her worry is that he is being portrayed as a "monster." While I disagree with her interpretation, I certainly don't want this blog to be a conduit for hurt and shaming. I did feel it was important to post the exchange we had because it underscores just how difficult this debate is and how huge the divide is, how ill-informed even  relatives might be of the lack of proper healthcare and access to it for the disabled.

I can't pretend to know much about economics or even the fine print of the healthcare bill. But I'm certain that the conflict is not really all about the healthcare bill. It's about profound differences in how citizens perceive the role of government. I'm not sure it will ever be resolved, and I only feel fortunate that we live in a country where we are free to disagree, free to say what we want without fear of being killed or thrown into jail. What I am certain of, though, because I do know firsthand what it's all about is that yesterday's march in Washington made a mockery of what good people are trying to do in this country for the healthcare of children and people with disabilities. And when my own relatives support it, that just makes me plain sad.

Saturday, September 12, 2009

What We're Up Against, Or




the proverbial apples and oranges...

This is an exact transcript of a "conversation" I just had on Facebook with a cousin of mine. I have deleted the names for privacy but it's otherwise copied verbatim. It speaks for itself, I think, but also brings up such complex issues regarding what it means to be a writer, to write honestly and to one's Truth. (Not to mention any sort of sensible compromise that might be forthcoming regarding our country and healthcare reform.)

(I should explain that this whole exchange happened under the comment of another cousin. I made no reply to that cousin but while reading the status updates came upon the inflammatory comments about myself.)

Cousin: but ya know our idiot cousin in L.A. is saying, "whats up with those people in mississippi"

Cousin: thats after she trashes her mom some more on her "blog"

Cousin: someone should drop a house on her

ME: Wow. [name of cousin]. Did you read my blog and are you disagreeing with my points about healthcare reform? My post was intensely personal as the issue is such an important one to our family, namely our daughter Sophie who suffers considerably from the status quo. Wouldn't you rather engage with me in a way that leaves out personal attack? Or were you counting on me not seeing these comments since we aren't "friends?"

Cousin: no i hoped you would. you should be ashamed of trashing your mom that has worked herself to death to help you. you were out of line. as for personal attacks i guess we are all just tired of being viewed as a bunch of "rubes" when you discuss this with our other aunt.
now on to health care. no i do not agree with your views at all. its not the governments(taxpayer) job to pay your bills. if you are having a hard time the church and family should step in. also a change in employment, place of dwelling, etc. all you have to do is ask. we all love sophie and would do anything for her. it should not be left up to strangers. nobody owes anyone anything.

Me: I'm guessing that you did not read the blog as there is no place in it that I "trashed" my mother. How dare you say these things when you know nothing about my life, my child, my job, where I live and how I live. Nor do you know my friends or community. How dare you judge me? I refuse to get into a war of words, here. I am a mother who does nothing but take care of her family which is why I'm so passionate about the subject. But I also realize that there's no "winning" with this. Clearly, we have nothing to say to one another, and I will rest my case knowing that I did NOT attack you in the vicious way that you did. It's clear that you are happy with the words you've written.

Me: And [my other cousin whose FB page this exchange is taking place on), I'm so sorry that your FB page was used for this. I had no idea this was coming and am sincerely sorry that it was used in this way.

Me: And, [Cousin's name]: I'd like to refute your claim that I am expecting the government to pay my bills. I am not "in trouble." I am passionate about reforming our healthcare system and making it accountable, including the government and the insurance industry. I maintain that it's a moral imperative. Your suggestion that friends and family should step in and help with Sophie's medical care is absurd. If you knew anything at all about our life, you would know this, so I'll just write it off as an incredibly ignorant statement that underlines all that I already believe about those who oppose healthcare reform.

How do you like those apples?

Friday, September 11, 2009

And I Thought I Was Done




I really did. I thought I was done. I wanted to be done. I was going to go back to posting about my crazy life with the disabled daughter, the absurdity of living with someone you love and not being able to really help her, fix her, make her stop having seizures. I was going back to posting poetry, idle musings about mindfulness, the beauty of the everyday, and yoga. I even started a food blog!

And then I talked, briefly, TO MY MOTHER. I love my mother, I really do. She was a wonderful mother, full of love and enthusiasm. I always felt safe and I always felt loved. But my mother is an ardent conservative and has grown increasingly so as she's gotten older. In fact, ardent might be an understatement. She listens to Rush Limbaugh and is, frankly, immovable (I guess the apple doesn't fall far from the tree?).  She is ideological to the core and such is the nature of our political discourse (think fiery, think pyrotechnics like you've never seen, think Civil War and brother fighting brother) that we're better off not talking about much of anything of substance at all. My father is a tad more moderate than she and a lot more reasoned, but I'd actually rather not engage him in political discourse, other than the sharing of articles that we read, because, well -- I'll boil it down to this: NEVER THE TWAIN SHALL MEET.

When my sister recently shared with me that our parents were going to be traveling to Washington, D.C. to pay her a visit and also go to a Anti-Obamacare Rally with a few other couples (and who knows how many other people), I brushed it off. I didn't want to think about it. In fact, I really blocked it from my mind and forgot about it. But tonight, when my mother called and started to tell me what she was doing this weekend, I had to hang up the phone. Even typing this makes me feel shaky and almost sick to my stomach, eight hours later. I know she detected something in my voice, because she's good at that. But I said my civil good-bye and hung up. It's difficult to parse out these feelings and make sense of them. I believe in honoring one's mother and father. And I'm bound to them, inextricably, the ties made of not just duty, but love and respect for who they are and what they've made of their lives. So much is at stake, I guess. This isn't just the usual disagreement about Republicans and Democrats, liberal versus conservative, etc. etc. For me, this issue is intensely personal and, while I don't expect the rest of the country to feel the same way that I do about what's happening with healthcare reform, I expect wish that my parents would, at the very least, be sensitive to what this means for us. For Sophie. Because the facts, for us, are not about Obamacare and the "slippery slope to socialism." The facts are that we have a daughter whose chronic healthcare needs have caused not only grief and anxiety and panic and devastation and depression and near-bankruptcy but that the healthcare industry, as it exists now, has contributed greatly and, in some cases, caused this. I am being intensely personal now, knowing full well that there are tens of thousands, if not millions of people like us, of children like Sophie. And more than half the reason I fight for healthcare reform and for healthcare quality for all is for those other children. But when I read that I might have to buy into a special insurance pool, run by private enterprise, to get health insurance for my daughter (one of the concessions made, under pressure by politicians under the stranglehold of private enterprise, namely insurance), I feel profoundly depressed and anxious. I think What is going to happen to us? And us, in this particular instance, means us,  The Husband, Sophie, my two boys and myself. I had felt a glimmer of hope when this whole healthcare reform initiative started, and let me tell you, it's the hope that can sustain you if you have a child with a disability and have fought some insurance battles before, if a bed for said child is taken away at a prestigious hospital because there aren't enough and the nurse who tells you this news answers your question If Madonna needed a bed for her seizing daughter, would she get one? and the answer is YES. You feel hope that there's going to be a change from the times you've had to fax prescriptions to Canada and London to get your hands on a drug that is too expensive for the FDA to look into approving but still costs you over $300 a month. You feel hope about a CHANGE when you hear that drug companies make grotesque profits marketing their wares on television, interfering with the sanctity of doctor/patient relationships, creating dependencies and, in some case, illness itself. I felt hope.

When I hear and know that my parents are going to support this kind of thing, the fighting of this CHANGE well, I feel defeated. And broken-hearted. And that, too, is an understatement. And that's why I can't speak to my mother, at least about her weekend rally. It's not about her right to protest something. It's much bigger because this protest is against people like me. Like my husband, like our sons. Like Sophie.

I now understand, a bit, the intensity of feelings that caused cousin to fight cousin and perhaps brother to fight brother during this country's terrible Civil War. It's a strange empathy and distinctly uncomfortable. It's horrible. It makes me wonder about the real power of love and family.

(I read THIS today and thought of the hecklers at the speech last night, the tight-lipped politicians, the rolling of the eyes, the shout "YOU LIE" with the finger pointed. Really. Really? There is nothing new under the sun?)

Thursday, September 10, 2009

How to Eat


This is me, more than twenty years ago, when I went to cooking school in New York City. Sorry about the weird scanned photo -- I don't know what the heck I'm doing when I scan something.

Because I don't have anything else to do, I've started a new blog.

I'm not kidding!

Check it out by clicking HERE.


Strength

Yesterday was the boys' first day of school, and I had planned to post something about it, but I didn't bring the camera to school and they're both sort of "over" me taking their picture and this year, since they're boys and I have a bit of a double standard, they weren't wearing new clothes (Oliver had on too-tight orange shorts and a Beatles Yellow Submarine tee-shirt, and Henry wore green shorts with a blue Vol-Com tee-shirt.). They didn't even have new shoes on. Times are tough (something that I haven't blogged about and I'm refusing to).

Anyway, this post isn't going to be about the first day of school. It's about a morning much like any other, except that it's tinged with excitement and not drudgery. A day much like all the other school days but because these include Sophie, are perhaps different than most. Sophie had her usual big bout of seizures when she woke up, and Henry had to sit by her for part of the time so that I could cook eggs and toast. He sat by her, keeping her safe until she really started to move off the bed and then he called me and I left the eggs in the pan and ran into her room. There's not much to do during these bouts, not much to do but keep reciting Lord Have Mercy, Christ Have Mercy, Lord Have Mercy, Christ Have Mercy, or Sat Nam, Sat Nam, Sata Nama, Sata Nama or The Lord is My Shepherd, I Shall Not Want, or look deep into Sophie's eyes when they aren't staring to the right with a frenzied expression, that she must stop, please stop, tell your brain to stop. I veer around from desperation to a Stepford-like calm. I wonder, fleetingly, if there's a protocol to this, how to behave, what to think, how to move on, how to accept the situation.  I hold her arms and smooth the hair on her forehead. I never stop believing and hoping that perhaps I CAN heal her by touch so I put all my intention toward her and will the seizures to STOP. And then I berate myself for trying to control what is clearly not controllable, an impossible dialectic that is only occasionally bordered by real tears. And then it does stop. And Sophie sits up and hums. And I get up, my heart pounding (and start thinking about how that litttle stressful episode is worth another pound or two if chronic stress causes weight gain) and I go to the kitchen and shake the scrambled eggs onto toast, just the way Oliver likes them and turn over  an egg, easy, just like Henry likes them.

All of this leads me to my very first kundalini yoga class in some months. I was there, today, after I dropped the boys off at school and The Husband (who came back from work where he had been since 6 am) took Sophie to her school. I lay on my sheepskin on top of my mat and did the poses and the breath came back to me as if no time had passed. I felt a residual strength in my core that surprised me and the floating away of my anxiety that surprised me even more. And in the middle of a meditation, as I breathed in and out and thought through the thoughts and watched them go by, I saw as if a word were a substance, floating in front of my eye, my third eye, actually, STRENGTH.. And in that moment I knew without words that I am strong and that earlier in the morning, I was strong. And all the other mornings and even the middle of the nights were the same. And that was the way to be. Just strong. And I must be gloriously strong because tears fell from my eyes it felt so simple. Being with Sophie in the morning like I am, even on the days when I want to shout and cry and gnash my teeth, I am strong. I can't tell you why this seemed like a breakthrough, but when I saw it I felt strong. Pure. Clean.

Yoga is an amazing thing (even if you're embarrassed by its hipness).

Wednesday, September 9, 2009

Evidently, It's Not Happening, Yet




Q: Is there any cause for optimism?
A: Well, personally, yeah. Everybody's got a life to lead and they've got a bodhisattva tendency, everybody wants to do good, so I just think on a personal level, yeah. On a larger scale, there doesn't seem to be any hope unless compassion becomes a more widespread important teaching on how to live. Compassion to self and others.

–Allen Ginsberg, from "Spontaneous Intelligence: An Interview with Allen Ginsberg," Tricycle, Fall 1995

Tuesday, September 8, 2009

A Last Hurrah

you've got to click and make this bigger to really see it!


I took the boys and Sophie to Santa Monica yesterday late in the afternoon. Frankly, summer is gasping, and so am I. We didn't want to do the whole drag everything down to the beach since it was incredibly crowded with Labor Day people, so we decided to rent bicycles and ride toward the Santa Monica Pier. I had brought Sophie's stroller and figured I could just stroll her while the boys rode, but then I decided to cart Sophie along behind me in one of those carts meant for two toddlers. Sophie is fourteen and of average height, but she's very light and likes to sit with her legs crossed, so she seemed comfortable and I was thrilled at the prospect of some exercise. The sun was sparkling in that late summer way on the ocean, sailboats were twinkling by and everything was rosy. The bike path was mobbed with cyclists, but the boys were doing well and we just kept riding. We passed families barbecuing, people playing volleyball, surfers changing out of wet suits and flashing their skin, homeless people rooting through trashcans and a whole beach of exercise hoops and rings and a tightrope walker who had the blackest skin and the biggest, rippling muscles the boys had ever seen (click on the photo above and see him up close!). It was there, at the outdoor "gym," that we stopped and watched for a while, marveling at all the athletic prowess. And it was there that Sophie started having one of her long clusters of seizures, the kind where her arms and legs thrust out. Where she bucks like a wild horse and groans. This went on for probably twenty minutes, during which I did what I always do: crouch over her,  it's all right it's all right and try to keep her from banging her elbows and feet. I was sweating in the sun and I suddenly lost my temper, but only INSIDE MY HEAD. Meaning, I thought I wish I could kill myself right now. I wish  we were dead. If you're worried, don't be. This feeling doesn't come often and I imagine that many of us who do this job over and over day in and day out for years and years have it. The beauty of this blog is that I have a space, a place to write it. It doesn't feel like a secret and wear me out.

Thank you for listening.
My last hurrah is actually for the summer.

And this is for you, courtesy of Albert Einstein:

Strange is our situation here upon earth. Each of us comes for a short visit, not knowing why, yet sometimes seeming to a divine purpose. From the standpoint of daily life, however, there is one thing we do know: That we are here for the sake of others...for the countless unknown souls with whose fate we are connected by a bond of sympathy. Many times a day, I realize how much my outer and inner life is built upon the labors of people, both living and dead, and how earnestly I must exert myself in order to give in return as much as I have received.
Albert Einstein

Monday, September 7, 2009

Unless Perverse Subliminal Messages Are Included And We Can't See Them,

here is the message that President Obama plans on giving tomorrow to our schoolchildren. Perhaps the President and his devious elves took out the socialist brainwashing stuff, but folks, I stand firm, here, still in disbelief that people have objected to opt out of this (and I cut and pasted this from some website, so the google ads are stuck in the middle, brainwashing all of you):


Prepared Remarks of President Barack Obama's Back to School Event

Arlington, Virginia
Tuesday, Sept. 8, 2009
The President: Hello everyone — how's everybody doing today? I'm here with students at Wakefield High School in Arlington, Virginia. And we've got students tuning in from all across America, kindergarten through twelfth grade. I'm glad you all could join us today.

I know that for many of you, today is the first day of school. And for those of you in kindergarten, or starting middle or high school, it's your first day in a new school, so it's understandable if you're a little nervous. I imagine there are some seniors out there who are feeling pretty good right now, with just one more year to go. And no matter what grade you're in, some of you are probably wishing it were still summer, and you could've stayed in bed just a little longer this morning.
I know that feeling. When I was young, my family lived in Indonesia for a few years, and my mother didn't have the money to send me where all the American kids went to school. So she decided to teach me extra lessons herself, Monday through Friday — at 4:30 in the morning.  

Now I wasn't too happy about getting up that early. A lot of times, I'd fall asleep right there at the kitchen table. But whenever I'd complain, my mother would just give me one of those looks and say, "This is no picnic for me either, buster."

So I know some of you are still adjusting to being back at school. But I'm here today because I have something important to discuss with you. I'm here because I want to talk with you about your education and what's expected of all of you in this new school year.

Now I've given a lot of speeches about education. And I've talked a lot about responsibility.

I've talked about your teachers' responsibility for inspiring you, and pushing you to learn.

I've talked about your parents' responsibility for making sure you stay on track, and get your homework done, and don't spend every waking hour in front of the TV or with that Xbox.

I've talked a lot about your government's responsibility for setting high standards, supporting teachers and principals, and turning around schools that aren't working where students aren't getting the opportunities they deserve.

But at the end of the day, we can have the most dedicated teachers, the most supportive parents, and the best schools in the world — and none of it will matter unless all of you fulfill your responsibilities. Unless you show up to those schools; pay attention to those teachers; listen to your parents, grandparents and other adults; and put in the hard work it takes to succeed.

And that's what I want to focus on today: the responsibility each of you has for your education. I want to start with the responsibility you have to yourself.

Every single one of you has something you're good at. Every single one of you has something to offer. And you have a responsibility to yourself to discover what that is. That's the opportunity an education can provide.

Maybe you could be a good writer — maybe even good enough to write a book or articles in a newspaper — but you might not know it until you write a paper for your English class. Maybe you could be an innovator or an inventor — maybe even good enough to come up with the next iPhone or a new medicine or vaccine — but you might not know it until you do a project for your science class. Maybe you could be a mayor or a Senator or a Supreme Court Justice, but you might not know that until you join student government or the debate team.

And no matter what you want to do with your life — I guarantee that you'll need an education to do it. You want to be a doctor, or a teacher, or a police officer? You want to be a nurse or an architect, a lawyer or a member of our military? You're going to need a good education for every single one of those careers. You can't drop out of school and just drop into a good job. You've got to work for it and train for it and learn for it.

And this isn't just important for your own life and your own future. What you make of your education will decide nothing less than the future of this country. What you're learning in school today will determine whether we as a nation can meet our greatest challenges in the future.

You'll need the knowledge and problem-solving skills you learn in science and math to cure diseases like cancer and AIDS, and to develop new energy technologies and protect our environment. You'll need the insights and critical thinking skills you gain in history and social studies to fight poverty and homelessness, crime and discrimination, and make our nation more fair and more free. You'll need the creativity and ingenuity you develop in all your classes to build new companies that will create new jobs and boost our economy.

We need every single one of you to develop your talents, skills and intellect so you can help solve our most difficult problems. If you don't do that — if you quit on school — you're not just quitting on yourself, you're quitting on your country.

Now I know it's not always easy to do well in school. I know a lot of you have challenges in your lives right now that can make it hard to focus on your schoolwork.

I get it. I know what that's like. My father left my family when I was two years old, and I was raised by a single mother who struggled at times to pay the bills and wasn't always able to give us things the other kids had. There were times when I missed having a father in my life. There were times when I was lonely and felt like I didn't fit in.

So I wasn't always as focused as I should have been. I did some things I'm not proud of, and got in more trouble than I should have. And my life could have easily taken a turn for the worse.

But I was fortunate. I got a lot of second chances and had the opportunity to go to college, and law school, and follow my dreams. My wife, our First Lady Michelle Obama, has a similar story. Neither of her parents had gone to college, and they didn't have much. But they worked hard, and she worked hard, so that she could go to the best schools in this country.

Some of you might not have those advantages. Maybe you don't have adults in your life who give you the support that you need. Maybe someone in your family has lost their job, and there's not enough money to go around. Maybe you live in a neighborhood where you don't feel safe, or have friends who are pressuring you to do things you know aren't right.

But at the end of the day, the circumstances of your life — what you look like, where you come from, how much money you have, what you've got going on at home — that's no excuse for neglecting your homework or having a bad attitude. That's no excuse for talking back to your teacher, or cutting class, or dropping out of school. That's no excuse for not trying.

Where you are right now doesn't have to determine where you'll end up. No one's written your destiny for you. Here in America, you write your own destiny. You make your own future.

That's what young people like you are doing every day, all across America.

Young people like Jazmin Perez, from Roma, Texas. Jazmin didn't speak English when she first started school. Hardly anyone in her hometown went to college, and neither of her parents had gone either. But she worked hard, earned good grades, got a scholarship to Brown University, and is now in graduate school, studying public health, on her way to being Dr. Jazmin Perez.

I'm thinking about Andoni Schultz, from Los Altos, California, who's fought brain cancer since he was three. He's endured all sorts of treatments and surgeries, one of which affected his memory, so it took him much longer — hundreds of extra hours — to do his schoolwork. But he never fell behind, and he's headed to college this fall.

And then there's Shantell Steve, from my hometown of Chicago, Illinois. Even when bouncing from foster home to foster home in the toughest neighborhoods, she managed to get a job at a local health center; start a program to keep young people out of gangs; and she's on track to graduate high school with honors and go on to college.

Jazmin, Andoni and Shantell aren't any different from any of you. They faced challenges in their lives just like you do. But they refused to give up. They chose to take responsibility for their education and set goals for themselves. And I expect all of you to do the same.

That's why today, I'm calling on each of you to set your own goals for your education — and to do everything you can to meet them. Your goal can be something as simple as doing all your homework, paying attention in class, or spending time each day reading a book. Maybe you'll decide to get involved in an extracurricular activity, or volunteer in your community. Maybe you'll decide to stand up for kids who are being teased or bullied because of who they are or how they look, because you believe, like I do, that all kids deserve a safe environment to study and learn. Maybe you'll decide to take better care of yourself so you can be more ready to learn. And along those lines, I hope you'll all wash your hands a lot, and stay home from school when you don't feel well, so we can keep people from getting the flu this fall and winter.

Whatever you resolve to do, I want you to commit to it. I want you to really work at it.

I know that sometimes, you get the sense from TV that you can be rich and successful without any hard work -- that your ticket to success is through rapping or basketball or being a reality TV star, when chances are, you're not going to be any of those things.

But the truth is, being successful is hard. You won't love every subject you study. You won't click with every teacher. Not every homework assignment will seem completely relevant to your life right this minute. And you won't necessarily succeed at everything the first time you try.

That's OK.  Some of the most successful people in the world are the ones who've had the most failures. JK Rowling's first Harry Potter book was rejected twelve times before it was finally published. Michael Jordan was cut from his high school basketball team, and he lost hundreds of games and missed thousands of shots during his career. But he once said, "I have failed over and over and over again in my life. And that is why I succeed."

These people succeeded because they understand that you can't let your failures define you — you have to let them teach you. You have to let them show you what to do differently next time. If you get in trouble, that doesn't mean you're a troublemaker, it means you need to try harder to behave. If you get a bad grade, that doesn't mean you're stupid, it just means you need to spend more time studying.

No one's born being good at things, you become good at things through hard work. You're not a varsity athlete the first time you play a new sport. You don't hit every note the first time you sing a song. You've got to practice. It's the same with your schoolwork. You might have to do a math problem a few times before you get it right, or read something a few times before you understand it, or do a few drafts of a paper before it's good enough to hand in.

Don't be afraid to ask questions. Don't be afraid to ask for help when you need it. I do that every day. Asking for help isn't a sign of weakness, it's a sign of strength. It shows you have the courage to admit when you don't know something, and to learn something new. So find an adult you trust — a parent, grandparent or teacher; a coach or counselor — and ask them to help you stay on track to meet your goals.

And even when you're struggling, even when you're discouraged, and you feel like other people have given up on you — don't ever give up on yourself. Because when you give up on yourself, you give up on your country.

The story of America isn't about people who quit when things got tough. It's about people who kept going, who tried harder, who loved their country too much to do anything less than their best.

It's the story of students who sat where you sit 250 years ago, and went on to wage a revolution and found this nation. Students who sat where you sit 75 years ago who overcame a Depression and won a world war; who fought for civil rights and put a man on the moon. Students who sat where you sit 20 years ago who founded Google, Twitter and Facebook and changed the way we communicate with each other.

So today, I want to ask you, what's your contribution going to be? What problems are you going to solve? What discoveries will you make? What will a president who comes here in twenty or fifty or one hundred years say about what all of you did for this country? 

Your families, your teachers, and I are doing everything we can to make sure you have the education you need to answer these questions. I'm working hard to fix up your classrooms and get you the books, equipment and computers you need to learn. But you've got to do your part too. So I expect you to get serious this year. I expect you to put your best effort into everything you do. I expect great things from each of you. So don't let us down — don't let your family or your country or yourself down. Make us all proud. I know you can do it.

Thank you, God bless you, and God bless America.

Digging Deep





The Dream Keeper

Bring me all of your dreams,
You dreamer,
Bring me all your
Heart melodies
That I may wrap them
In a blue cloud-cloth
Away from the too-rough fingers
Of the world.

-Langston Hughes

Sunday, September 6, 2009

Sunday Sermon

I haven't told you, but I got into a bit of a blog snafu the other day (who ME? A snafu?). I read, regularly, the blog of a person who writes well and passionately about causes that she really believes in. Her opinions are usually very well thought out and I enjoy reading them because they are the polar oppposite to my own, politically. Last Friday she wrote a bit about this education debate and the address that Obama is going to give this Tuesday to public school children. In her comment section (and I'm not giving the link because I know my own readers and most would find it incendiary!), though, were several remarks that I personally found ignorant and outrageous, the sort of stuff you hear on prime-time cable news -- you know the stuff that Rush and Glen and all the other buffoons espouse and then fan into hysteria -- anyway, I opened my very big mouth and quicker typing fingers and shot off a comment of my own that then engendered what I wouldn't call a discussion but a defense of what this blogger said. And in one of those comments the word racist was flung, the insinuation being that since I'd made a sarcastic remark about Texas being the source of all this bullshit about the Obama speech and how I was glad that I didn't live in Texas, well, I was a racist.

And that made me MAD AS HELL. But  the person who called me a racist was actually, really ignorant about what a racist is and what it actually meant. And when the dust settled and she had apologized quite gracefully and I had compromised by admitting to some prejudices, all seemed well.

And I walked around most of the weekend, thinking about the exchange and at turns feeling sickened by not so much it, the "debate" in the comment section of a blog, but by the significance of The Thing. By my certainty that what is happening in this country around Obama is something unprecedented, something almost unclean and deeply, deeply serious. And it makes me nervous and anxious and almost ready to get the hell out of Dodge and move to another country. I don't want to make peace with people who listen to Rush and Glen Beck and wear guns at town hall meetings because they can. I don't want to come to some sort of compromise with people who keep asking whether Obama has certified that he was born in this country. I don't want to be friends with people who think their children are going to be brainwashed by socialism if they listen to the President give a twenty minute speech in their public school classroom. I don't want to be compassionate toward those who throw around the terms "pull yourself up by your bootstraps" and "liberty" in the same sentence while they advocate torture and innocent slaughter of tens of thousands of people in countries tens of thousands of miles away.  Perhaps I'm growing more and more intolerant, but I'm just weary of trying to be tolerant of the intolerant. Because the truth is that I don't care if my children are educated about socialism, and I don't care whether the phrase "under God" is in the Pledge of Allegiance or not. I don't care what public official has had what kind of affair with whomever, as long as it's not interfering with his duties as a public servant. I really don't care.

I could rant and rant forever, I suppose, but I won't. I'm tired.

And now I'll direct you to the most kick-ass Sunday Sermon I've read in a long time, from my friend Ms. Moon at Bless Our Hearts. Go read it by clicking HERE.
(and now do I say, God Bless America?)!!!!!

Saturday, September 5, 2009

Not Mello



One of the benefits of living in this crazy town is sights like this, seen today in Beverly Hills by my friend D and I. I guess you could say it's a mixed benefit because really what makes one more sick than a bright yellow Rolls Royce? We had just gone to the movie "District 9" that I HATED. On the way out of the women's bathroom after the movie, I practically ran into a guy who was holding two American Girl dolls in his arms, clearly waiting for his daughter who was inside. I made eye contact because he looked so goofy, holding the dolls and then I simultaneously realized that it was Marky Mark, Mark Wahlberg.

Only in LA. (But the skies are oh so blue and the fires appear to be contained for now and the light is just golden in a transparent way).

Because I'm Being Obtuse

of late, I think that I should perhaps come clean. The image, below, of the stones, a cairn I think it's called is something we came upon two weeks ago in Yosemite. Someone had built these beautiful symbols of tranquillity and balance in the creek. They are clean and pure.

These are the things I'm thinking about these days, hiding behind wit and irony and projecting onto the issues of the day:

1. Sophie is doing well but it's tiresome to care for her day in and day out, always feeling guilty that I'm not doing enough and knowing full well that it is enough to love.
2. Scared shitless that my respite care, already minimal, is going to be cut.
3. Ignoring a shrinking bank account, knowing that I can't really afford the help I have but not seeing a way out. I'll go insane.
4. Opening my eyes in the morning and running through my worries, literally, for the first time in my life. I used to be a morning person.
5. A flailing through the spiritual and waiting, perhaps impatiently, for grace.
6. Wondering what the long-term effects of this embattled life and feelings are doing to my boys.
7. Aware simultaneously that I need to meditate more often, pray, exercise and this is all illusion.

And that's all. The rest is obfuscation.

Stones and Silence



Stones
Silence
Sameness
Sadness
Sorrow
Simple
Softness

Friday, September 4, 2009

Since the Country's Clearly Gone Mad

I think that I'll relate our lunchtime conversation today. The Players are:

Henry: Age 11
Oliver: Age 8
Me: Age 46
Sophie: Age 14

Henry: Do you think I'll be alive when the world ends?

Me: Why do you ask?

Oliver: Scientists say the world is ending in 2012.

Henry: That's three years.

Me: I don't think scientists say that.

Both: Yeah, they do. There's a movie about it.

Me: Nah. People are always saying the world is going to end. Always have.

Sophie: MMMMMMMMM.

Henry: Oliver will one day fart so loudly, the world will end.

Oliver: Yeah. An atomic fart.

All: (dissolve into uproarious laughter, showing peanut butter and pretzel teeth)

Clearly, my children would BENEFIT from a message from their President.

Freaking Freedom Out Friday


Dear Mr. President,

I'm so confused about why people don't want the President of the United States speaking to their children about staying in school and getting a good education. Are you going to come on the loudspeaker and pre-empt the lunch menu announcement or something? Anyway, I wish that my children could hear the President of the United States speak directly to them, but their school doesn't start until Wednesday.

Good luck with all the nutty folks who are scared that you're going to come over the system and implant socialist thoughts into their precious brains.

Sincerely,
Elizabeth

Thursday, September 3, 2009

Day 76


This is Day 76 of Summer Vacation 2009. Due to the fires and poor air quality, days 70-76 have been spent mostly inside. It's 11:00 in the morning and we're all still in our pajamas. I have to say that given the state of affairs, I've surrendered completely. I am doing absolutely nothing as a parent but providing meals and even those are haphazard. Henry and Oliver, to their credit, have been amusing themselves beautifully. This morning, they bandaged Oliver's "broken" leg and constructed this helicopter pad for their remote control AirHog helicopter. In the background, one can catch a glimpse of the Lego Eiffel Tower.

As for Sophie, she's roaming around her room, half-dressed as well. I feel a bit guilty that I'm not doing much with her, either. Yesterday, I got the call from our Regional Center that respite care will be cut drastically in thirty days unless I appeal. I'm going to appeal, but perhaps I'll take Senator Coburn's advice and go knocking on my neighbors' doors to get some help (here's another chance to read a brilliant blog post by a friend if you click on the senator's name).

I'm going to change into some clothes and perhaps take a shower.
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