Sunday Rumpus Essay

“Grief – like social class, its sociological equivalent – is the greatest divider, but it is also a leveler. Not everyone is going to “raise their rank” or be born with one, but everyone will experience grief.”

http://therumpus.net/2012/08/sunday-rumpus-essay-shadows-and-ghosts-batman-thomas-cromwell-and-the-corporation-of-yaddo/

New article on Salon.com

Someone to hold me:  As I face my son’s inevitable death, I realize how little I once understood grief, or how to help a person in pain.

http://www.salon.com/2012/07/12/someone_to_hold_me/

The Waiting Game

A great poem by Timothy Staley, another participant in the Five Powers Poetry workshop this summer in Santa Fe. Thanks, Tim!
The Waiting Game
Vikings never ask, are we there yet? instead, they scan the horizon, armored hips
            pressed against the railing
It’s not Russian roulette, or regular roulette where a tiny white ball jumps the track
and slowly sinks in a marsh of bile
Vikings try to sneak up on you but they’re noisy with their helmets rattling
against branches, not to mention their laughter, almost always overdone
It’s true, one day the Operating Room nurses will take your baby down a far-off hall,
where she’ll get smaller in their arms until they turn a corner and assemble
around her to open her belly like the bow of a Viking ship opens the sea
It’s nothing where you see the end like the line for a roller coaster,
but more like waiting for the nurses to leave so you can down
another bourbon
And you go to sleep with waiting and rise with it curdled on your tongue
Or bracing for the Mississippi to crest thirty-two miles from shore
Or waiting for a B positive liver to be offered to Texas Children’s Hospital,
            in Houston, room 1222 where your loved ones are down under
three inches of bile
Several nurses and doctors will tell you it’s a waiting game and games,
you like games
I knew a Viking that was afraid of water
Vikings, like anyone, love that rush they can’t stop, that pressure up form their hearts
into their heads, before they sob
Don’t worry, you can write instead of crying
It’s Hermann Hesse’s Journey to the East—which is mostly in your mind—and about
not giving up on God the moment He seems to have disappeared
like the moment his characters delve into the gorge of Morbio Inferiore
It’s all the waiting God controls the odds of, like waiting for a tornado’s
hot and cold to split, and by now you’re wishing the phone would ring
with a B positive liver offer for your daughter, but in your heart
you doubt it will, because God has something left to teach you
Has to make you suffer or accept through some hardship, you can’t even imagine
or worse, there is no God, just a pile of syringes, a bayou of bile, and of course,
that brackish breeze
When Vikings don’t have phones, they use screaming or fire
It’s not waiting for a hangover to recede or a taxi ride to Rothko Chapel where maybe
under the onus of art you’ll find God
It’s not Leif Erikson but The Wreck of Hesperus, one’s daughter bound to the mast
            in a hurricane
Will your faith make it? do you trust these are divine dealings? no answer?
are those eagles you see circling above her hospital crib, are they here
to claw out her liver, will it grow back again?
It’s not Eastern medicine or Western or talking to the trees or crossing the street
when you’re not supposed to, it’s a butterfly in a blizzard and a satellite
looking down, it’s a hospital room under an ocean of bile and the nurses
laughing at your spine like a dorsal fin swishing, breaking the surface
There was one Viking who was very polite, though in the evenings he found a darkest
corner of the ship to listen himself cry
If only your heart was broken, how easy life would be
I’m not sure if it’s like waiting for love, I can’t say because I’m in the thick of it,
            like Leif Erikson before he went pro, I’m franticly scanning for land,
waiting for winds, chased by a salt lens three miles wide, when the water runs out
and a grey bank of clouds shrouds my vessel and acts as baby’s breath
in the bouquet of my sinking

Poem for a Lost Birthday

Poem for a Lost Birthday

 

Like a lover, your life bends down and kisses your life. – Jane Hirschfield

 

Today you are — years old.

 A dream:

I followed a man

for whom I carried compliments

and a stack of graded papers

marked with “A’s.” In his house

 

two children sat in a tidy kitchen.

A woman with straight dark hair

moved down the hallway. I left

a handprint on the bare wall.

 

This man led me to a room.

He had washed my silk underwear, my

bra, a shapeless sweater that sunk

the drying rack.

 

“How are your silks?” he asked.

I collected my garments and became undone.

My hair grew long and changed color. The heels

of my white shoes sunk into the grass as I ran.

 

You can only miss what you continue to love.

June 28, 2012

That, finally, is all it means to be alive: to be able to die

-J.M. Coetzee

In Preparation for a Death

 

So this is the labor:

scooping up the dry

bodies of flies

from beneath the meditation mats,

watching the dark

cluster in the dust pan,

I’m thinking about the time

I barfed on a subway platform.

It was very late, and I

imagined the person

who would take care of my vomit

before the morning commute. She

wore orange pants. Her fingernails

were clean. Her hands were very strong.

I wiped my mouth and got on the train.

In this way we are all the same.


Monkey, Baby, Lion – Guest Post by Weber

Last March I visited Emily, Rick and Ronan in Santa Fe – this was the first time I had met Ronan, and it was shortly after his Tay-Sachs diagnosis, in January 2011.  This May I flew from Boston to ABQ to visit again.  

I’d heard from Emily about how Ronan is doing – through this blog, facebook, and by phone, email and text – and so had some idea of what to expect. Certainly not the changes one would usually expect in a child between the ages of one and two.  As the disease has progressed, Ronan has lost his  sight and seems to be always gazing at a middle distance.  He can’t control his arms and legs, nor hold his head up –  so he is a sweet soft lump, an oversized baby who needs cradling and support, one of which is a stuffed turkey that provides head support.  He also has a neck support that has animal faces on either side.  Monkey, baby, lion.

Ronan doesn’t seem to respond to any visual or auditory clues, but he occasionally makes satisfied lip-smacking sounds and happy sighing noises. I think they’re happy noises. Ronan is clearly surrounded by a tidal wave of love, and if love could cure Tay Sachs, that would’ve happened long ago.

Ronan can still eat. Slowly, mushy food and liquids, but he is still able to swallow. This is, clearly, very important. The decision to move to a feeding tube is not to be made lightly and is not something, at this time, that Emily and Rick want.

Emily has already mentioned that Ronan has seizures. With medication, the seizures are fewer, but they still happen. He has what Emily calls “screamy seizures,” where the fear center of his brain is being triggered and he cries out. This did happen while I was sitting in the backseat of the car with him – he shrieked and his little arms and legs went stiff. It lasted only maybe half a minute, and he seemed to go back into his peaceful state.

We hung with friends, old and new for both of us. We went to Chimayo, which I’ve heard so much about. On N.’s suggestion, we stopped at Lake Santa Cruz, which was beautiful and blue in contrast to all the New Mexico beige, and so, so perfectly quiet.

We did some kick-ass yoga and ate amazing food (has anyone else heard of
escabeche?!) We hung out in the outdoor whirlpool and missed the solar eclipse. We spoke, carefully, of what might happen next.

I think that is the hardest thing – not knowing what will happen next or when. (Well, one of the hardest things – not be able to delay or stop the disease in any way is insanely awful). Will Ronan still be with us in the fall, when Emily’s new teaching schedule begins? Will he be one of the babies memorialized at the next Annual Family Conference hosted by NTSAD (or as Emily calls it, Tay Sachs Spring Break)? Will he stop eating and begin hospice care?

Emily and I go way back.  Not as far back as some her many friends, junior high and high school, but we did meet in our early 20s, and I’ve seen her through many life changes.  I worry about what will happen to Emily.  Everyone who reads this blog knows how strong she is.  When Ronan is gone, her life will change dramatically, and I think it’s a shift that could leave even the strongest reeling.

There will be an NTSAD fundraiser in Ronan’s honor in Santa Fe in September – stay tuned for details.

Guest Blog by Elizabeth Tannen!

A beautiful post by my friend, the terrific and talented writer Elizabeth Tannen.

 

            It’s evening in Santa Fe, and I’m standing with Ronan in his bedroom. He lies on his changing table, his body still, sheathed in a long-sleeved onesie dotted with penguins. I stand above him, beside the closet of his small, colorful clothes, next to the Big Apple Circus poster that reminds me of childhood in New York. 

            My response to being with Ronan is binary.

            In this moment, his presence soothes me with a visceral calm: a singular sweetness, a, soft, peaceful feeling. The perfect shape of his tawny eyes, the soft of his hair and skin; I stroke his body and feel at ease.

            But hours later, as I lie falling asleep in the next room, my mind lurches with the urgent, burning fury that Ronan’s illness provokes. It asks impossible questions: Why must you be this way? Why can’t you tell us how you feel? Stay longer? Be someone you’re not?

            For the past two years I’ve taught creative writing to undergraduates. Teaching them to shape stories has reminded me of the basics of human nature: those things that seem obvious, but we don’t always consider. Mostly, it’s renewed my attention to the human need to know why: to seek connections, to explain why one thing leads to the next, to know how people fall in and out of love, why people get sick and live or get sick and die. How can I avoid this fate, we ask, or achieve it, myself?

            At a restaurant earlier the same day I sat with Emily and Ronan and roiled with anger at an older couple sitting next to us: the ones with matching Lululemon from their morning run and stiffly coiffed hair.

            Why did they fill me with such rage? I wear Lululemon, sometimes, too. They weren’t even intrusive, like the older man in a knit cap who wandered over like some self-anointed Buddha and announced that Ronan looked sleepy; or the blond woman who wondered whether he could talk.

            No, this couple meant well. They admired Ronan in what seemed to them an appropriate way: pausing as they walked to their table, cooing at him, admiring his eyelashes, asking, “How old?” They smiled as they sat down and paid us no more mind. Perhaps they sensed something wasn’t right with Ronan; perhaps they didn’t.

            I know this is a regular routine for Emily: the observations and, sometimes, interrogations of well-meaning strangers. With babies, as with dogs and celebrities, people feel entitled to approach. Such interactions, I imagine, are part of the landscape—wrenching and turbulent—of being Ronan’s mom.

            But I’m not Ronan’s mom: I’m a friend, a piece of his world, a piece that comes in and out. And this routine isn’t something I’ve stomached enough to know how to let sit. So I watch that couple happily spoon bites of oatmeal into their mouths and I project my own anger. I project my own longing to know why—to ask (even if they don’t!) those impossible questions—and I find myself hating them for feeling exactly like me.

            Ronan’s life confounds the natural desire to understand. There are no answers to the questions our minds want to ask. We don’t know, can’t know, how he feels now or will tomorrow; why, besides the cruelty of genetics, he has the life he does. Why sometimes his body trembles and shakes and sometimes rests peacefully; whether he hears the songs his father sings to him and how it makes him respond. Ronan can’t give us the kind of sense we seek.

            And I wonder, as I stand above Ronan, grazing my fingers along his calf as Emily warms his bottle in the other room, if this is why he brings me—brings all of us privileged to know him—so much peace. Because we can’t ask the questions we want to ask. We can only be, in the moment, beside him, briefly touching the life he has. 

Wasp’s Nest

Tonight, at the National Tay-Sachs and Allied Diseases Organization’s Annual Family Conference in Orlando, I attended a commemoration ceremony for the children who have died this year and in previous years. The name of each child was read aloud. Pictures were shown. Candles were lit. A room full of grieving people. In February I wrote this poem for Miss Elliott, the daughter of my friend Becky. I post it tonight in honor of all the children who have been lost to these diseases, and to the amazing parents who loved them each day of their lives. Deep love equals deep loss, and parental love requires emotional bravery. There’s no other way. 

 

 

Wasp’s Nest

 

For Becky Benson

 

There is nothing I understand.

 

The nest fell to the ground. Framed

first in the window at five o’clock,

 

holes like a heart,

heat like a heart but empty too-

It is mid-winter, the wasps

half-resurrected. Why a space to house what isn’t there?

 

Here today, gone tomorrow.

 

There is nothing

I understand-

 

This moment spinning flakes

at the cold window, scabs

of old songs, old

curses. Valentine,

 

there is no veil

between the world

breaking

end of everything. Lying

 

in bed with pieces of

the fallen mind lifted

from a body,

 

hot snowball thrown into the gravel walk,

hell-bound rocket.

 

Where is it?

 

I found it easily

under the pile of dirt beneath

the window, snow-pressed, blown

along side, replacing what you wanted to see.

 

All night it was here and now what?

 

It is early. Time

to leave

the top of the staircase.

 

The upper hand

The lower hand

I have no hands,

no help.

 

Somewhere nearby,

far off, around this corner-

my baby swings in the bitter

peace of the dying.

 

If only I could strike!

Stinging and wakeful, touch it,

take it

in my mouth, end all desire-

 

Silence at five in the morning,

downstairs, listening: Where is it? Where-

 

Here all the houses are burning

but I am the only one looking

and I understand nothing

of this place.

A gift from my friend Monika….

For Emily

 

Last night you dreamed of a silver lake, a shelf of ice on the side of a mountain, and a sleeping brown bear.

The icy side of the mountain came with all the familiar sounds – a sizzling crack somewhere deep and unseen, some wind blowing like a backward scream, the requisite screeching bird.

The bear lay like stone against the only exit from your son’s room. Her breath puffed in slow grunts, pushing and pulling a downy feather to and fro. Her black lips curled into her matted fur.

The lake had the glints on the surface, and the laps of the waves, and the murky depths that say “Ignore the rest. I am what counts.” You don’t remember the sky. You’re not sure it was there.

 You woke up with your pillow damp, your hands tucked under your chin. Swore you’d never sleep again. And then your reluctant prayers began, the ones you deny to quivering voices, the “if you are there, then please,” the “whoever you are, please listen.” Hated yourself for saying please, hated yourself for saying them at all, hated everyone everywhere everything.

Afterward, you ate the smaller portion of the bagel your husband sliced. Toasted. Dry. He had already crumpled the newspaper, its corner stained with butter, and left you a note on the counter:

At the doctor. Will call.

When children dream, they can only tell us the highlights, how the robot hugged them or how the puppy was green. There is no plot at all, it seems, no need to decipher a meaning or future. Just a dream. And their nightmares are similarly streamlined. A monster. A clown. A snake. Just a snake.

Your dreams have become almost as slick. One message drowns out the rest. Something is waiting.

When the phone rings, you don’t jump. The news can bring nothing new. What more is there to say. But you listen carefully and then return to your day, absorbing the latest deteriorations.

You write your words. You wash your hands. You fold the laundry and put some on and then push your body into a sprint all the way from your front door to the canyon and back, sweat like a purging of some blackness, feet flogging cement to beat out the darkness. For a moment, you cross the finish line. For a moment, you win.

And then they’re home, and you hold him. He is so heavy, a surprise every time. His sweet-smelling hair sticks to your damp face. He becomes part of you again while you try to become him. He smiles, some unexpected impishness. He won’t let you in. You press your lips to his. His eyes don’t see you see him.

He sees this: The bear and the ice and the lap-lap of waves. The hiss and drip-drip of the shortening of days. He simplifies his pain. He is content to lie on a lap. That’s his gift to you, and the gift that you gave. It’s not just mercy, it’s progress. When you hold his hand, he squeezes for an instant. Fear grips you, the new defense against hope. But his smile stays.

This boy will someday take each touch you gave to the grave, a sweet blanket. No memory of how each day unfolded, or your crumpled shoulders, or his father’s slow fading. Just a rush of sure love and life, and then brief uncertainty, and then silence. Blue. Sky. From below the surface of the lake. Hope submerged. A smooth stone in the cool mud. Content to be dark.

Or a silent constellation. Brighter than white.

It’s late at night, and you’re awake. You keep writing your words and drinking your tea and your husband leaves the doorway and you hear the creak of the bed. There’s nothing left to say – it’s all been said. But you keep typing it away anyway, the uncertainty, the dread. A rendering of anger. Sudden, unwelcome humor. They all lie together like kindling for a fire.

You stand by your baby’s bed. The whir of machines. His chest, slow to rise, quick to fall. Damp fists. Slack toes. Pursed lips. The smell of him.

Tonight you dream of a red, dry crack, a scar, a fissure, across some blank canvas. A desert? A belly? Some untold secret. An injury just beginning or ending. You draw closer to peel apart the edges. A cavernous pain. And then suddenly, a wide swath of blue across the distant depths. The crack fills. Water floods the lens, a dam not holding, rushing toward you. A baby in a glass bottle, riding the torrent. What is the message, you feel yourself screaming. What will I learn?

And then. And then. The turn of corner comes. The water recedes. The old dream returns.

But the lake is quiet. The surface is still. The bear stands and shakes herself, stumbling toward the door. The block of ice is illuminated by sun. It clarifies the mountain beneath, sliding down toward you, melting as it comes.

Your face wet. The baby free of the glass. The doorway open. Dust in the air. The unknown.

You rise with an eighth more of something. Smile at him. Suffocate a little less. Rethink the dream.

 

Rick Santorum, Meet My Son

New post on Slate.com – “He has a degenerative disease that has left him blind, paralyzed, and increasingly nonresponsive. If I had known before he was born, I would have saved him from suffering.”

http://www.slate.com/articles/double_x/doublex/2012/02/rick_santorum_and_prenatal_testing_i_would_have_saved_my_son_from_his_suffering_.html