There must be a better title for this Medscape article

Here are the newly published articles in your area(s) of interest for June 29, 2012: Epilepsy Reason for Optimism in Epilepsy? Medscape Neurology   ADD MORE TOPICS »   And for those of you who take things quite literally, I'm aware that there might be a treatment on the horizon that gives those who deal with the scourge hope, but as a minor wordsmith and lover of the embellished, I'd rather the title of the academic paper was: Reason for Not Killing Yourself Over Your Child's Refractory Epilepsy.

Things I Hate, Part 2

You might want to warm up on Part I, here, that got a surprising amount of comments which leads me to believe that in a general culture of constantly striving for happiness, there's room for a bit of the curmudgeonly. I only have a few to start and hope you'll join in, if you feel the need. Otherwise, go on with your cheerful outlook.

1. The expression "necessary evil"
2. Deflated balloons -- the ones that slowly drift around the house as they lose air are cool, but I just can't stand the ones that lie on the floor, sometimes for days and days (at least in our house) until someone, always me, brings them to the garbage. Then I usually wonder, with a small bit of agitation, whether I should shove them into the garbage bin, slightly blown up, or pop them and then put them away, which leads me to:
3. Popping balloons and balloons that pop. I hate the tension that precedes the one and the startle reflex that comes at the other.
4. Hearing about miracles, particularly present-day ones that involve brain surgery or anti-epileptic drugs and children who have been miraculously saved and/or whose seizures have miraculously stopped due to having 1/2 of their brains removed or three doses of the new med. Humor me here, but I've had this fortune cookie fortune in my wallet for twelve years:

I wonder if the Chinese word for "never" was accidentally translated to "soon."

     5.     When people use the word cynical improperly, as in calling me cynical for the above hatred

     6.     My own curmudgeon-liness when faced with others' kind intentions and overtures. 


     7.     Weird formatting issues like the one above -- this happens when I cut and paste -- the highlighting 
              behind the words. How do I get rid of that?




Reader, what do you hate these days?

Moved to grateful tears, again, by Ian Brown and changing the world

I wrote about Ian Brown's amazing book The Boy in the Moon nearly a year ago. Today, I came upon a  snippet of video on Louise's blog from a presentation he gave at Holland Bloorview.

Please watch this:



Did you listen to Mr. Brown's dream? The one about L'Arche and living and working, creating, doing what you do, in these homes between where these people live? For one month? Did you hear him describe his dream of you eating your meals, three times a day and then bathing one person once a week? Did you hear him imagine how that would change the world?

I believe it to be so.

Information and More Nurses

I found this outline of what the Affordable Care Act does and what it will do very helpful. It came from my House representative, Karen Bass. 

Currently Available Provisions (since 2010)

• Covering preventive health services such as mammograms or colonoscopies without charging a deductible, co-pay, or coinsurance
• Immediate access to insurance for uninsured individuals with a pre-existing condition
• Eliminating pre-existing condition exclusions for children
• Tax credits to small businesses that cover at least 50% of their employees’ healthcare
• and more... 

Changes Available starting in 2012

• Encouraging hospitals, Accountable Care Organizations, and Medicare to work together to improve the safety and quality of patient care
• Ensuring that doctors are paid according to the quality of their care, giving hospitals a greater incentive to continually improve how they deliver care
• For the full list of 2012 benefits

Changes in 2013

• Reimbursing over-the-counter medications under a flexible spending accounts
• Health insurance companies must spend a higher percentage of the premium on healthcare and quality

Changes in 2014

• Eliminating annual limits on covered benefits, so insurance companies cannot limit the care you receive
• Establishing affordable insurance exchanges and allowing you to compare health plans
• Learn more about provisions in 2014

Changes in 2015 and Beyond

• Paying physicians based on value, not volume
• Ensuring we continue to innovate and lower heath costs
• Excise tax on high cost employer-provided health plans becomes effective in 2018 to prevent discrimination
• More information about the future provisions of the Affordable Care Act.

And now, for your amusement:

I'm concerned about the ring on his finger -- and who is that lady with the red nails?

This would definitely be me, if I were a nurse.

Looks like Little Red Riding Hood grew up to be a nurse and The Big Bad Wolf
is eating her up!

And finally, this is for all my fellow care-givers:

I could never resist a doctor who smokes.

Did you think I wouldn't write anything?

Well, I was as surprised as the next person yesterday, when the Supreme Court upheld the Affordable Care Act (I refuse to call it Obamacare). I'd spent most of the week tamping down my fury at what I thought would happen: they'd overturn certain provisions or even overturn it entirely and we'd have to sit around until November listening to the chortles of the Republicans and the smug strict "constitutionalists," followed by more insane wrangling by both parties and lots of ugly rhetoric and I'd still be paying exorbitant amounts of money for health insurance with no end in sight. Well, I'll still be paying insane amounts of money for health insurance with no end in sight (at least until we really get universal health coverage), but at least there's something in the monolithic act -- a small step, but one forward that directly impacts my daughter and tens of thousands, if not millions of other disabled and sick people like her.

In the end, I'm not going to thank the Supreme Court, an institution that I perhaps cynically don't trust one whit, but I am going to thank President Obama and those who came before him, as well as those who hammered out the actual act and those who voted for it. You won't find me yakking about the constitution and all the shit that I know absolutely nothing about, but I will say that certain provisions of the act and the overall attempt to rectify what is surely one of the most abysmal healthcare systems in the western industrialized world are going to improve the lives of the disabled and their families, among others. And I do know something about that.

In the meantime, when I googled "vintage nurse photo," to decorate this post, I came upon a treasure trove of books. I'll share a few of them here, so instead of being all smug-like or erroneously jubilant about the Supreme Court's decision -- hell, even if you think like some of my Facebook friends that Obama is the Pied Piper, playing his malevolent flute while we all descend to hell -- you can just politely sigh and feel relieved or start drinking heavily before the descent and then be diverted and snicker and laugh at how fantastic these are:

Evidently there were ways to cure depression before Prozac

A particularly awesome storyline, I imagine -- icy cold to flaming hot

I can't imagine who is so hateful in that beautiful town by the sea.

And probably my personal favorite:

Why I Love Los Angeles, Reason #4,567,324

Last Saturday night I took the boys to a new outdoor movie venue in the middle of Hollywood called Oscar Outdoors. We sat in low chairs and on blankets, munching popcorn and warm doughnuts, with a couple hundred people in a new park space. They showed an early Little Rascals episode and then we settled down to watch Ferris Beuller's Day Off. Because it's Los Angeles, we listened to some of the cast members' memories of making the film, including the secretary to the principal, and then one of the editors and the producer of the movie. Because it's Los Angeles, when the sun went down, it got very chilly, but we had brought sweatshirts and blankets and bought some hot chocolate to warm our hands. Henry and Oliver laughed and loved the movie, and when we gathered up our stuff and walked back to our car, they asked me why the girls wore shoulder pads under their clothes and styled their hair so weirdly -- to which I replied that it looked no worse than skinny jeans and buzz cuts.

It's really quiet around here

Oliver went to camp for two weeks on Sunday. I can't say I like the quiet.

On a Tuesday afternoon in Beverly Hills,

 Henry couldn't feel his mouth because he'd just been to the dentist, so I promised him some ice-cream next to the cupcake store, and we walked through a gauntlet of paparazzi with their big cameras, slouched on parking meters and sprawled on benches, their laptops open and talk of Beeeeeeely Bob Thornton being in the building across the street, and the sky was blue and I pushed Sophie in her wheelchair and I felt contempt for the paparazzi and felt bad about that, my mood, my mood. But we walked and then Henry waited on line at the Sprinkles ATM where cupcakes come out in a box, a brown little box with a sticker on top. Henry waited behind two girls that looked as if they might be bringing cupcakes back to Hugh Hefner in his Holmby Hills mansion just up the road. A large man with shorts and shoes wrapped in masking tape stood with his sign, asking for food.  A large group of fully veiled Muslim women had moved from the cupcake machine to the ice-cream store and were wrangling their sons, and the dapper man sitting at the table next to me and Sophie spoke in quick Hebrew to his own children grabbing at his pockets for money. My mind wandered toward the Middle East, the Gaza Strip, a wandering I hadn't had in a while, and I imagined my eyebrows raised and I imagined a bomb going off  but things don't happen like that in Beverly Hills. A little girl with a pale drawn face walked by Sophie and stared so completely that her head nearly turned round backwards, and when it almost did, I glared at her and thought ugly thoughts and then wondered why I couldn't be the sort of person whose mind didn't travel toward contempt of a a Beeeeeeely Bob Thornton shot, toward bits of people who hate one another flying around a cupcake store, toward hatred of a tiny child staring at my daughter as if she were a strange and exotic animal in a zoo.

I did notice the sun glinting off the palm tree in the blue sky in the shiny brown of my table-top, when I ducked my head.

Gus

Our young friend Gus died early this morning, struck down by cancer. We're sad and will take a break from blogging for a few days. It's weird and terrible to go about one's life when things like this happen.

Highway 30

At two in the morning, when the moon
has driven away,
leaving the faint taillight of one star
at the horizon, a light like moonlight leaks
from broken crates that lie fallen 
along the highway, becoming
motels, all-night cafes, and bus stations
with greenhouse windows,
where lone women sit like overturned flowerpots,
crushing the soft, gray petals of old coats.


Ted Kooser

Poetry Oracle

Grace catches you out like a hook,

you're pulled out of yourself, a moment,

and that's the ache: peculiar blow,

reminded you aren't who you think you are.

Mark Doty, from "The Pink Poppy" in School of the Arts

Summer Afternoon

Maybe she'll stop humming if I give her a taste of my chocolate shake.

Henry, Hamburger Hamlet

Izzy and Erika

I drove about an hour south today from Los Angeles to visit my dear friend Erika and her beautiful little girl Izzy who has been hospitalized for over two weeks. Izzy has Angelman Syndrome and was in status (seizures not stopping) so had to be put into a chemical-induced coma to allow her brain to rest. As if that's not enough to deal with, when they weaned her from the coma, she got into a little trouble with her breathing and adjusting to life outside of intubation, so she's still in the PICU, struggling. The amazing thing about Erika is that despite a hellish few weeks, she not only looks adorable but continues to laugh uproariously at all the absurdities of this life -- like the sign above that welcomes one to Fountain Valley, a city basically off a huge Southland highway that's one of the plainest and most nondescript places you could ever imagine. That motto A Nice Place to Live was written for the likes of Erika and me who survive this bizarre world we live in by reveling in the absurdity quite literally. When Phil, Erika's very adorable husband arrived, I took Erika away from the little hospital to a nearby strip mall where we enjoyed delicious Greek food and exchanged horror stories. Erika shared a bit of her reading with me (dark tales of dissociation and split personality), I told her about my own dissociation during a visit to a brain surgeon years earlier, and we agreed that hard-core brain surgery for our girls was a line we'd probably never cross. We were actually shrieking together at one point, over the voices of the Vietnamese who have evidently settled in vast numbers in Fountain Valley because fountains are blessed? While my own horror stories pale in comparison to Erika's, the camaraderie between us is something that I just feel profoundly blessed by and another reason why these internets are just a powerful place to connect to others.

I'm sending all my love and healing thoughts to little Miss Izzy, who, while currently hospitalized in a nice place to live, must get better soon and go back to her little house by the sea. As for Erika, I'm hoping she'll get to wash and style her hair at some point soon.

Ouch

via Writing Time

They might have said, I'm sorry, I'm sorry, I'm sorry.

Rampage on the Summer Solstice

Nope, this isn't going to be a rant or an angry post. I read a bunch of daily words and inspirationals this morning, Buddhist thoughts and mantras. I even meditated. But as Sophie's humming wore on this morning, and I stripped her bed for perhaps the millionth time (she'd wet through, again) and I looked at the detritus of a school year lying everywhere, just everywhere, the adrenaline kicked in and I told Sophie to be quiet while I fix your breakfast. I got a white piece of paper and used a Sharpie to create the above sign and I threw out the Lego salt and pepper shakers that have been sitting on the windowsill in the kitchen for years, never used, and I didn't look behind me. I had a Kurtzian the crap, the crap moment and moved on. The Brothers sleep on, oblivious to the jungle that surrounds them, the Summer Solstice secure.

Laughing Song


When the green woods laugh, with the voice of joy
And the dimpling stream runs laughing by,
When the air does laugh with our merry wit,
And the green hill laughs with the noise of it.


When the meadows laugh with lively green
And the grasshopper laughs in the merry scene,
When Mary and Susan and Emily,
With their sweet round mouths sing Ha, Ha, He.


When the painted birds laugh in the shade
Where our table with cherries and nuts is spread
Come live & be merry and join with me,
To sing the sweet chorus of Ha, Ha, He.


William Blake