Saturday, March 17, 2012

La Chaîne Officielle de Marine Le Pen

Ew, freaky-gross, ick!

You know, I am always scoping out the terrain.  I hit upon this erudite young man's YouTube channel after enjoying the comment that he posted after a video on the death of John Demjanjuk:

[...This guy burned villages with childrens.]
vitjoki91 31 minutes ago

This guy never burned shit. He wasn't even charged with that you stupid jerk. He was charged with being a guard at some camp with no evidence. And my ancestor were allied soldiers. The Holocuast is also way exaggerated and given too much importance today.
Perseiden2 19 minutes ago

I was perusing his interesting channel when my eye was drawn to the list of "featured channels," channels that he wished to promote within the context of his prevailing interests.

Do you see it?  Can you believe it?  Ninth one down!

La chaîne officielle de Marine Le Pen!

O Hoots of Frightened Laughter!

Featured Channels

I'm about to burst with curiosity. How did Perseiden2 come to endorse Marine Le-Freaking-Pen? It's a hellish marriage to contemplate, the monstrosities engendered not the least of it.

The Hunt for Normal

I have so much to say.  I just wish it would cohere.  Also, I wish for a secretary, a non-judgmental polyglot wordsmith.  Who bakes and scrubs toilets.

Beware this sudden conviction that I have so much to say, as it comes in the wake of several days spent feverish and nauseated, and most recently, sleepless.  Fred calls me "hyper" when I get like this.  Fred also never believes me when I blame it on a fever.  Fred can be annoying.  As if there were some behavioral component to my... behavior!  Harrumph, and harrumph.

O, my Brooklyn Boy!  Annoying on occasion, almost always kind, forever driven to plumb the recesses of something called "normal."  He is doing something that I did a few years ago, though with less of a sense of mystery.  He is contacting a sibling, his younger brother, whom he hasn't seen, with whom he hasn't spoken, in forty years.

Fred's parents were monsters.  They dedicated themselves to hurting him in ways that are too imaginable, too memorable, so that today his Hunt for Normal is marred by incessant imaginings of the world's propensity for abuse, and by cascading onslaughts of memory:  a stiff leather shoe to the back of his head, a loved one's knife thrust, incessant assurances that he'd amount to nothing.

Do not make my mistakes.  Do not assume you have heard all the pertinent stories, gathered all the damning details, and assigned some sort of limit to your loved one's tensile strength.  It is shameful that I ever consider anyone immutable and static, much less Fred.

Caught up in myself, my pain, my own stuckness in stuckitude, I felt virtuous to note, several times each day, what Fred was doing, and his demeanor.  Of course, stuck in stuckitude, Fred's demeanor meant his feelings toward me, his actions on my behalf or to my detriment, and any other narcissistic point of view the moi-moi-moi-in-me could come up with.

But then dear Fred would shyly show some sign, an astringent that cut through the greasy smears, an acid that clarified what was otherwise a jumbled mess of sensations.

His eyes would be red-rimmed, the trail of tears still there on his ruddy cheeks.
Those same reddish cheeks can go pass-out pale, blotchy, bloodless.
His sobs have carried to the far reaches of The Manor but so briefly that you could choose to assign the noise some other cause, or declare that it came from the opposite direction.  You could, but you don't.  You're not yet that egocentric.

It used to be that he'd punch walls and doors, throw things [and animals], kick things [and animals], screaming himself hoarse.  He never hurt the animals, but he did scare them, and me.  It's a frightening, violent thing, Fred in the throes.

Anyway.  One night, or very early morning, the silence from his workroom felt ominous, so I ventured back there to see what was what. It being hard to sneak up on someone in a dilapidated wheelchair, Fred heard me coming, and seemed to welcome my noisy arrival. In the course of my usual inquiries, and almost in the form of complete and simple declarative sentences, Fred told me the story of the male infant who died -- a baby brother -- when Fred was just, I believe, four or five years old.

He remembers the baby, he remembers the dead child being taken from their apartment. His parents' profound grief, his own confusion. And he has somehow determined that rough point in time as the start of most of the abuse his mother, in particular, dedicated to his destruction.

A reasoning man, often reasoning to the point of absurdity, reductio ad absurdum, Fred concluded that he had somehow killed that baby, thereby so offending his parents that they branded him -- a hyperactive, intelligent, loving child -- as the source of their bad fortune.

She tried over and over to kill him, our Fred.  And though he survived, with his goodness and capacity for love intact, he also broke into pieces.  He grew into a man for whom the world was a soldered amalgam of stained, broken glass.

I don't mean to think about that unpleasantness, especially now that Fred is reaching out to his surviving brother, an occasion likely, I am convinced, to bring him great joy (as a similar instance brought me).  It's just that I see frailty pretty much everywhere these days.

Frailty pisses me off, especially when it's the best descriptor of my own state.  It means I am subject to the whimsy of even inanimate objects, of the bathroom floor, should it want to swallow me up or give my brain a good shake.  It means my will subsumed by a wad of heavy, wet, sweet-smelling clothes stuck to the speckled gray enamel bottom of the washer.  It means faceless voices suggesting "case management."  Frailty, most of all, means not being able to take care of those I love.


The weekends are sometimes rejuvenating for Fred -- as he spends at least Sunday morning with the Sisterhood, the Militant Lesbian Existential Feminists, who are always up for a good time, or a good argument.  They're likely all a-twitter this week, given the purported Attack on Women, that wily stratagem of the Merger and Acquisition Department of the GOP.

I roll my eyes as Fred informs me that he, too, would like to impede the progress of the Violence Against Women Act, because "men abused by women are left out." I tell him this is not so, and I don't much guard my tone.  [I have terrible tone.]

I show him proof, copied from a government web site:

Q. Can A Man File A Petition For Himself Under The Violence Against Women Act?

A. Yes, VAWA applies equally to victims of either sex. 

Ergo, I am correct.

Fred counters, "Well, that isn't widely known, and besides, why can't we call it the Family Violence Act, so that inclusion is obvious?"

He's right.  The Sisterhood may look at him askance tomorrow morning during the Sharing of Our Existential Outrage portion of the worship service, but he's right.

Annoyingly right, often -- because in the Framework of Fred, gradations of right are meaningless.  It is all or nothing in FredLand.  One of his favorite things to ponder?  The joys of instructing The Wrong on the perils and pitfalls of their predilection for Logical Fallacies.  The boy practically salivates, actually believes that correcting faulty procedures and iffy premises will alter the world's swirl of unfounded opinions, that great tornado!

Do you see why I love him?  His persistence in being right is a supremely optimistic evolution for a beaten and belittled child.  He has learned, of course, that not everyone will respond to his right or wrong world view, though he clearly thinks that with a little effort, they could, and should.

I don't have a point to make, so call this a Reminder to Self, so call this a bit of a "vent."  I am always slow to venture out after a period of insulating, severe illness.  It feels like what I imagine little Dobby felt the first time he bolted out of doors and cowered, shivering, under a midday sun -- the protective ceiling is gone, there is too much air, and the boards under my feet, how did they become molten lava?

I have to relearn old lessons, for the umpteenth time.  Things like, "that's life," and "it's not about you."

If you've any to spare, send our Brooklyn Boy some openness to nuance as he sets out to build paths and bridges that safely skirt the accreted muck of generations.  And if you are a particularly gifted empath, able to sometimes project your will onto the will of others?  I love it when Fred brings me coffee in bed (Italian roast with just a smidgen of milk) and there are three dryer-loads of clothes that want folding.

Thanks for letting me ruminate, percolate, gesticulate!

Next week, Bianca, Fred, Abbot Truffatore, and I begin the task of cobbling together another wildly successful ManorFest, the premier summer event in the region west of Tête de Hergé's Lone Alp. We'd love it if former Fest-Goers would leave their suggestions for improvement in the comment section of the blog.  Bearers of the Best Ideas win free passes to The Labyrinth, with complimentary extraction provided after just 14 hours.

Wednesday, March 14, 2012

Childhood Cancer, Humble Heroes

Dear Reader, use your influence in the universe, in God's World, with whomever you house in your Pantheon, on behalf of 7-year-old Derek.

I am following the journey of four children with cancer, something that began with Layla Grace, who lost her battle before the desperate hearts of many bloggers and tweeters, as her parents shared her with us, selflessly.  In so doing, they managed to explode a good many preconceptions while reinforcing some comforting old truths.

Layla and her Dad 
I've posted regularly about Kate McRae -- who is entering a new and unknown phase after receiving unexpected and delightful good news.  All while being glad and learning to cherish a new normal, her parents are having to contemplate possibly stopping a good portion of her therapy.  Mom Holly has left an incredible journal of faith, anguish, and celebration at CaringBridge.  Yesterday, she wrote:

Our options are few... taking her off treatment all together and watching to see if tumors that have had time to grow resistant to the treatments grow. Or to find a new treatment. She is currently not eligible for any medical studies, as there has to be measurable disease on a brain scan, a reason for which I am entirely grateful she doesn't qualify. This leaves us to choose from less than ideal treatments, or foregoing treatment. Both with their own unique troubles.
Derek was in Florida, vacationing before travelling to Boston for a new treatment necessitated by a vicious return of his cancer, and began to have unmanageable pain.  Home again, a morphine drip eventually made him comfortable.  His trip was scheduled for yesterday, but Derek had a "massive seizure," and plans were changed.  He and his family are feeling the sudden shift from pursuit of a cure to palliative care.

The word 12 hours ago was that Derek is "resting comfortably" in the hospital, where he stayed overnight as a precaution.

He's a plucky boy, very bright, blessed with a family of depth, humor, and heart.  I've marveled at him and all of them many times;  I've tried to learn what they have to teach, as they smile through the tears.

This Friday, Hannah, who has osteosarcoma, will have a major, life-changing surgery called rotationplasty.  I will be honest:  Even knowing that this decision was made by wise people who love and are invested in Hannah, hearing about this radical surgery coincided with some preexistent nausea and I lost it.  Since then, respect for her bravery and for her desire to live life after cancer in as unrestricted a manner as possible has replaced my initial wimpy somatic reaction. Hannah's Mom has recommended this video for folks to learn about rotationplasty:

Uploaded to YouTube by mayoclinic on Sep 3, 2010:  "This is a pre-surgical video which describes rotationplasty, who the procedure is appropriate for and possible complications. This video depicts the process of being fitted for a prosthesis and learning to use it. The patient describes her active and satisfying life after rotationplasty, her emotions and the process of adjusting to living with a prosthesis."

The fourth child I follow is a complicated Little Man.  His situation is complicated by the complicated socioeconomic factors at play within his family. It's all so... complicated.

More than any other child I've followed, this kid has been subjected to medication and treatment side effects that out-demonize even cancer.  I've come to love his Mom, and her pluck, her persistence in the face of All That Is Unfair.  I've come to understand him, knowing something of life on constant steroids, understanding how the face in the mirror came to be that of a stranger.

So these are the four young ones that I "follow." I don't stalk, I don't contact them or their families except occasionally through a comment in their CaringBridge or CarePages journals.  It would certainly creep me out to have a stranger jump into my concerns -- and these sites are set up to provide patients and families with a good measure of protection.

Derek's family is so warm, so desperately funny as they travel with their "special boy."  They would go to the ends of the Earth were there a treatment available for him, and are now brought up short by the realization that the treatment phase has passed:

The twist to the story, or the change of plan, is that Harvard is no longer an option. We have nothing left in our bag of tricks. The doctors indicated the disease is progressing faster than they anticipated. We need to enjoy every day and make it count. God has other plans for Derek.....see, I knew that boy was special.

But while God has plans for him, Derek is still here, and still in need of prayers, though no longer for a cure, but for peace and comfort.

Please continue to hold him in your hearts.