8.07.2013

puff of smoke

The first frame of the cartoon depicts Jessie Jackson and Al Sharpton wishing upon a star for an end to racial strife and bigotry. In the next frame the two men disappear in a puff of smoke.

I took offense to the caricature that arrived in my email inbox, and it got me thinking ... hard. My take on it is that the illustrator and those sharing his views think that outspoken critics of racism, particularly African American ones, are culpable for inciting racism in this country, and if we just got rid of them (and perhaps those they represent?) we could eradicate racism once and for all. The mere thought of this kind of logic turned my stomach.

It made me think of Calvin, my darling, disabled, legally blind, non-verbal, epileptic, medicated nine-year-old boy, and of the documentary I just watched called The Architecture of Doom. The film, which illustrates Nazi attempts to purify their nation, explains the miserable rational for the systematic extermination of the infirm, the disabled and the Jews, all of whom were thought, erroneously, to be contributing to Germany’s downfall.

Then my mind spun to a world in which diehards grumbling about women’s liberation might’ve thought that the annoyance would simply disappear if the figureheads of feminism, women such as Susan B. Anthony, Gloria Steinem, even Lilly Ledbetter, were simply squashed. I thought of the nations in which girls and women are not allowed to go to school, to work or to show themselves in public, and of countries like India who so undervalue the gender that abortion of female babies has lead to a shortage of marriageable women, and countries in which women are blamed, shamed and punished for being raped. And then I thought, of course, of the brave Pakistani teen, Malala Yousafzai, who was shot in the head by the Taliban because she campaigned for girls' education. Thankfully, she did not go up in a puff of smoke and her voice advocating for change can still be heard.

I thought of a world in which people who grouse about disability rights might prefer that disabled people, like Calvin, simply disappeared. I thought of how this country undervalues the lives of disabled people, discriminates against those with physical or mental deficits, is blind to their unique contribution to a rich, diverse and compassionate society. I remembered how, not long ago in this country, in some states people with epilepsy were forbidden to marry and in others were forced to be sterilized. To this day many people with epilepsy continue to hide their affliction and keep secret that their children suffer the disorder for fear of being outcast.

I wonder why some people in society, such as the comic’s author, hunger to suppress the voices of common decency who champion the ethical and equal treatment of all citizens, how a society can undervalue and subjugate women, minorities, immigrants and the disabled and go so far as to blame them for the ills of a nation when the opposite is likely to be true? Why? Because of fear, ignorance and the indifference of small minds.

And so to defy these bitter wishes I will love Calvin for who he is and for his loving contribution to our family, our community and to the human race. I will continue to exalt the powerful and virtuous voices of truth and equality from the mouths of the oppressed—black people, women, gay people, immigrants and the disabled. I will hope for a nation that separates itself from much of the rest of the world, embraces and respects all walks of life and I’ll wish that any misguided ideology that slights its own decent citizens is seen for its prejudice and simply goes up in a puff of smoke.

Internet image

8.05.2013

waiting for me

It’s an oppressive black sky that looms overhead;

The heart-stopping stir of falling in dreams.

It’s vertigo’s creep just at the cliff’s edge;

And the white-knuckle angst of horror film scenes.

It’s dread of the dawn inside sleepless nights;

The pressure I feel at twenty feet deep.

It’s the smothering clasp of sinking in sand;

The insidious fear of a dark narrow street.

It’s the cold sweat of dusk in sinister woods;

The grim buzz of cicadas hidden in trees.

It’s the gnawing unease of the telephone ring;

And the panic of drifting far out to sea.

It’s the ulcerous pit that's deep in my gut;

The merciless weight of a tunnel’s dank heat.

It’s the nerves of an addict thirsting for smack;

It’s his seizure—I know—that is waiting for me ...

Waiting for me ... waiting for me.

8.04.2013

8.03.2013

report

Not much else to report today but the appearance of some anal fissures and constant constipation and incessant coughing and seems like he's hurting and it could be a headache because he's withdrawing from one seizure medicine just two days after a seizure and he's growing like a weed and he's irritable and pulling out my hair and giving tons of hugs and keeping me up at night and driving me nuts and walking so well behind the shopping cart and down the street to Woody's house and coughing some more and we don't know why though it could be pain or discomfort or gas or constipation or simply behavioral or all of the above.

Yep, not much else to report today but the usual.

photo by Michael Kolster

8.02.2013

friday faves - pity party

Written last August.

Today I'm having a pity party, all by my lil' old self. Waaaa! I threw it together at the last minute, just after I "slept in" until seven and rushed downstairs, in a fog, to count out Calvin's nine morning pills before it was too late. I quickly tossed back some of yesterday's cold, sludgy coffee then went to get him up.

My husband is away today, which makes my pity party even more pathetic. I have no one to gripe to about Calvin's irritable morning mood. I have little to no idea why Calvin is whining but he probably feels like hell for some reason related to his seizure meds. And, he doesn't want to eat (what's new?) So, after I encourage him to take his pills, I release him from his stockade and walk around behind him like the caffeine-deprived zombie that I am, making my best effort to prevent his baubblehead from banging into door jams. Between slurps of dead, gray coffee I thwart his countless attempts at biting everything in sight (I figure it's easily over 50,000 times that I've said, "don't bite that, Calvin") and it's getting really old. Waaaa!

My wiser side thought I should try to break up my pity party, which, though I do sometimes wallow in them, are really not much fun. So I loaded the kid into the car and headed out to the donut shop. There's nothing quite like grease and sugar to perk up one's spirits on a Sunday morning, except perhaps a Bloody Mary. Once parked, we made it no more than about three steps before Calvin refused to walk any further and "asked" to be picked up. I knew we'd be lucky if we got across the street without being run down by some out-of-towner speeding through Vacationland. I could barely see straight between attempts by my eight-year-old at head butting and yanking my hair out in clumps. This is Calvin's way of telling me that he isn't feeling well. Half way across, in front of an idling gang of motorcycle buffs—my pity party still in full swing—he belches. All is better.

Inside the shop, a quick gaze at the shelves behind the counter tells me that my favorite donuts are sold out. Waaaa! Luckily for me, Frosty's knows how to treat their customers, so Shelby slathered a cruller with chocolate icing and slid it into a bag. Calvin's mania had subsided enough that I thought I'd try sitting next to him in the booth. Between bites of my donut he sat and banged the hell out of the table marking it with little chocolate fingerprints and drool. But hey, at least he was happy, and I started feeling the sugar-high, too.

But back at home I crashed. My pity party perpetuates, pining for my paramour, deprived of a plethora of pleasures practically every other parent and their progeny is partaking in at this point: hiking, beach-bumming, fair-going, window-shopping, picnicking, swimming. Heck, these days eight-year-olds can probably go to the playground or to a friend's house all by themselves, as long as they're wearing a bicycle helmet. Not my kid. Waaaaa!

Instead, I'm sitting here writing as Calvin wakes up from his nap and bangs the shit out of his bed's safety panel. The perfect background music to a most pathetic pity party, indeed. I think it's time to call the Waaambulance!

8.01.2013

the deep grey swoon

The deep grey swoon
came out of the blue
Or did it?
Not quite himself today
I’d thought
A strange day for me
all in all
hemmed in and snagged
A faint ray of my mother
and then
hiding behind the sun
a hint of
Melancholia

He stood in the grass
in the shade of the cottage
waiting
it seemed
to take his next step
His gaze fixed at the sky
mouth agape
feverish cheeks
the naked blanched lips
of a mannequin
and those eyes I can't ever seem to
recognize or
forget

We watched
and waited
until it was sure
the seizure
and though he remained
still as a stone
Daddy plucked him like a fallen branch
and carried him
up the steps
inside
to the green couch ...
this gone
boy

Six thirty-four
I said
and he gulped
and gasped
pale as an agate
or a shard of frosted sea glass
sinking into sand
and we called to him
beckoned him back
our most 
splendid boy
from the deep grey
swoon