Dragon Prayer

I'm really slacking off here on the old a moon, worn as if it had been a shell.  I don't even know where to start. Do I even need to start or start back? Sophie turned 22 years old on the 8th, and there was a bit of celebrating,

but Sophie isn't doing so well.

I had a mini nervous breakdown this week, too, which involved some early morning throwing of the Virgin Mary Oracle and other desperate drama, and that was partly because the Republif*^ks are dismantling our healthcare and partly because I went into the wormhole of Trying to Figure Things Out and have decided that Sophie is suffering from benzodiazepine withdrawal syndrome.  Strangely -- or not --  figuring something out (meaning your intuition is confirmed/affirmed backed by research and science) means an incredible release from fear into calm. The two reasons for my mini nervous breakdown are intricately entwined and can be summed up in three words: Medical Industrial Complex. Normally, I'd explicate, but the rant would be epic and, to tell you the truth, I don't feel like wasting my anger on the screen, and I'm better now, calmer. I'm also too busy fighting with CVS drugstore and Anthem Blue Shield to switch the benzo from tablet to liquid so that I can begin the process of weaning again (I can take away tinier amounts if it's liquid). I think the struggle is similar to Ben Carson going from neurosurgery to housing and development, all while comparing slavery to immigration -- oh, Bless his Neurosurgeon heart. 

You're going to need a pre-auth because this is a narcotic, the earnest pharmacist told me for, perhaps, the five millionth time since Sophie has been on this drug for nine years (the drug should apparently not be taken for more than a few weeks but, hey, let's give it to babies with epilepsy!) I'm also administering a new protocol of THC to help mitigate the horrendous effects of the syndrome and gathering information from the wonderful Dr. Bonni and from my friends in the know because The People in Charge don't know jacksh*^t about marijuana. Speaking of those in the know, the Ass Hole Care Act (AHCA) as proposed by the Chief AH Eddie Munster will be devastating to those with disabilities in particular and not much better for everyone else. It'll be awesome for insurance companies, though, and medical device manufacturers and, I guess, for those yokels out there who think the government has been coming between them and their doctor with the Affordable Care Act (yokels, insurance companies call the shots, not the government but hey, big business, free markets, the glories of unfettered capitalism!)

Oops. I said I wasn't going to rant.

Maybe I should quote a little Jesus.

Blessed are the meek for they shall inherit the earth. (Matthew 5:5)

Then shall he answer them, saying, Verily I say unto you, Inasmuch as ye did it not to one of the least of these, ye did it not to me. (Matthew 25:45)


Bikkhu Boddhi says,  "if we are to close the gap between ideal and actuality—between the envisaged aim of striving and the lived experience of our everyday lives—it is necessary for us to pay greater heed to the task of repetition. "

I think of myself at present as a dragon coming out of a cave. There's vision and hope in the fire coming out of my mouth, and there's also my tail, its scales the glitter of the past, replicated over and over. The blast of fire. Drag. Swish.

Inspiration for the Day

Griffith Park Observatory, Los Angeles, 2010

I do not feel obliged to believe that the same God who has endowed us with senses, reason and intellect has intended us to forego their use and by some other means to give us knowledge which we can attain by them. He would not require us to deny sense and reason in physical matters which are set before our eyes and minds by direct experience or necessary demonstrations.

Galileo Galilei

There are some interesting notes over on The Writer's Almanac today about the great Galileo Galilei and his persecution by the Catholic Church during the Roman Inquisition in 1633. I had been reading a bit of news about Paul Ryan and his views of abortion, views that are so abhorrent and tiresome to me that I retreated to the daily poetry that I find on the Writer's Almanac. So, it's been 380 years since Galileo stood before the grand inquisitors for daring to buck the Bible and posit that the planets revolved around the sun, and while I realize this is a far different issue than a woman's right to control her reproductive freedom, it's not too difficult to imagine the likes of Paul Ryan as Grand Inquisitor of the "modern" age. 

Pre-Debate Remarks from the Peanut Gallery

Oliver, on hearing that Paul Ryan would be debating Joe Biden tonight:

When he smiles, that Paul Ryan has a face you just want to smack.

56 Million People with Disabilities Live in the United States

Sophie, 2007

I know I read somewhere that this year's election is costing something like 10 gazillion dollars -- all money that goes toward television ads, giant billboards, staffing, plane rides, dinner parties and barbecues and vote-buying, I imagine. Or influence-buying or whatever. And yeah, I know that some of that influence peddling is for causes that I support and believe in. But, whenever I hear the numbers -- from whatever side -- I feel nauseous for obvious reasons that I'm not going to talk about here. When the DNC calls me on the phone, asking for money, I hang up. I have donated absolutely nothing this year to the Obama campaign, NOT because I don't want him to win the election, but rather because I'm making, albeit ineffectually, a tiny little protest about the obscene amounts of money thrown around. I want to be able to say, in my heart, that I haven't contributed to the oligarchy -- at least in any meaningful way.

Allow me to be a bit narrow-minded in this space and pluck one issue out of the ether -- the issue of disability -- and judge the candidates running for President.

Mitt Romney and Paul Ryan's economic and social platforms, particularly Ryan's Medicaid plan, spell disaster for children and adults with disabilities. Nearly every major disability policy expert, as well as non-profit foundation censures the Ryan plan.  I don't pretend to understand the complexities, although when I hear the word "voucher," I imagine myself shopping for healthcare for Sophie in the "free market" which makes me think about poking my eyeballs out with ice-picks. You can read about them (not my eyeballs -- the Ryan Plan and what it means for the disabled) HERE  and HERE.

“For each of the two years that Paul Ryan has been chair of the House budget committee, he’s produced budgets that we’ve opposed,” said Katy Neas, senior vice president for government relations at Easter Seals. “The pick of Paul Ryan gives people another opportunity to look at the policies that he and the other candidates have proposed.”

The website disabilityscoop.com  has good discussions about disability and politics, if you want to explore the issue further.

President Obama recently met with a group of youth with disabilities to discuss the needs of the community. While there was no one there with a severe disability, like Sophie, the issues addressed -- unemployment, inequality, access, inclusion, healthcare and medication -- were met by the President with seeming sincerity and seriousness. Aside from the Affordable Care Act, which is far from ideal but makes inroads for those with disabilities, it remains to be seen what progress will be made. Something tells me that true awareness and empathy for the most vulnerable in our country is a great step forward.



I'm waiting anxiously as are 56 million others in this great country.

First day of school, "libtards," Ayn Rand, and Other ramblings

It's the first day of school for Sophie, but she's at home, sleeping off Diastat that I had to give her on Sunday night after a day of six gigantic seizures. I haven't the foggiest idea why she had so many seizures -- was it the heat? was it the moon? was her brain taking a riff off the flurry of small earthquakes we had? I'll never know, and neither will you. In any case, I left her at home with The Husband so that I could bring her paperwork to school, the boxes of educational stuff and her wheelchair and other accouterments. I was overjoyed that the aide assigned to her will be Millie, the same fantastic person who accompanied her to Communicamp the last two summers. It's almost too good to be true. It might even be a great year.

I walked the halls of the giant high school, tried not to wince at the boy with those giant earlobe stretcher thingamabobs who walked past me, or his friend who wore a black tee-shirt with giant white lettering that spelled out: LEGALIZED POT GANG or something like that. They had backpacks on and skate shoes and were laughing together, typical teenagers despite their off-kilter appearance. I am glad that I only wince when I see this and am not affronted, but I have no idea why this is so.

The other day, I stupidly engaged with a person who goes by the name Skunkfeathers when he comments on a conservative blog that I periodically check on to see what's up in that otherland. Skunkfeathers likes to refer to people of the liberal or left persuasion as libtards, of which I am one, and when I objected to the term, he kept at it. In the ensuing exchange, he claimed You may call the term 'libtard' an attack on a class of handicapped; you're free to do so. A person with a condition from birth, I don't consider 'retarded'. They have a disability. Many of which overcome it with hard work and guts. I promptly told him that his comment was not factual and, actually, ignorant, but the last sentence is the one that I've been perseverating on for nearly a week. Many of which overcome it with hard work and guts. I think it's the word overcome that stops me short and helps me to make the segue to the vast space, ever increasing, between those on the "left," and those on the "right," those that think the recent appointment of Paul Ryan as VP contender is depressing as hell and those that think his government-slashing, Ayn Randian group-think is the answer to the question of the legion of lazy, shiftless folks, including the disabled, who persist in exhausting government monies and leeching from what really matters: a powerful military and the promulgation of American exceptionalism, shoved down the throats of those who just don't know better. Sophie's seizures began for no apparent reason shortly after her initial vaccinations at two months of age. When the seizures didn't stop, her development sputtered along with periodic plateaus, and despite hard work and guts for over seventeen years, she can't talk, can only walk with assistance, wears diapers and must be fed. The other night, when I snapped off the plastic top of the syringe that holds the Valium, dipped it into the foil packet of lubricant, lay Sophie gently on her side and inserted the drug into her rectum, I wondered if she -- and I -- worked hard enough and had guts enough to keep going.

I won't pretend to understand the finer points of Ryan's famous budget proposal, but I do know that if enacted, it will decimate, completely, the already weak supports that people like Sophie and her family (The Husband, me, Henry, Oliver) and other libtards -- as well as conservatives -- depend upon to give our lives a modicum of sanity.  At best, I'm thinking this potential decimination is due to ignorance and fear of The Other, and I'm not sure what to do about it other than keep bleating when I can.

When I told Oliver about the Republican operative in Pennsylvania and his comments about the retarded, Oliver burst into tears. He then uttered the F word, which, I'm certain, some might call an example of the deteriorating values of our young people. I told Oliver that he shouldn't use that kind of language although it might, perhaps, be fitting in this particular circumstance. I then told him that people are ignorant and afraid of what they don't understand. Sometimes, I told him, they're just stupid.