Thursday, April 14, 2011


When I think of myself these days, if I think of myself at all (because sometimes one doesn't, sometimes there is no reflection, just being in the world), I see a paper cup of coffee. With enough milk so that the coffee loses that depth of field that even the darkest clear liquids have, enough milk that the liquid becomes opaque, the milk blooming to the surface in soft globes. With a balsa wood stick, the milk is stirred, faster and faster, so that a vortex ensues, a cone like a three-dimensional 'v' seeming to draw everything down to the bottom of the cup.

That, of course, is not what happens. Rather, the vortex spirits the liquid particles down and in and then releases them to the sides, where they float up and back down into the vortex. (I keep typing 'vortext' which would seem to be some sort of contextual message). A self-contained system.

So this is me over the last decade or more. The vortex is Robert's health. Or it's my psyche. Or it's the nervous energy I used to bring to everything--but there was that ability to keep everything spinning at once, like the street acrobat who keeps the plates rotating on sticks. Of course, everything (medical bills, doctors appointments, writing, caregiving, homework-assisting, housebuilding, job-working) kept vanishing to the point at the bottom of the cup and then returning only to be drawn back in again.

What would it be like, I used to think, for things to be different? For an answer to emerge?

For many years, I was too busy to notice that these tasks repeated endlessly. That finishing them was only a prelude to return. As I said, medical bills, doctor's appointments, medication refills. The like. Completion seemed an art in and of itself, and completion was a good behavior pass that gave me time to write. And I couldn't write if things remained undone. But I wrote anyway, believing things were done, believing in the creation of mental space amid socio-temporal clutter.

In such a vortex (or vortext), there's little to hold on to. Things fly by, in and out of your grasp, and you just keep moving as though there were someplace to go. Because everything around you is moving. Frank Bidart has this poem about, how, at birth you are handed a ticket--something like that--but the poem operates on the principle of repetition, such that the poem becomes a vortex for its own words. And the words go round and disappear and resurface. The poem is in Star Dust; you should read it.

One imagines change as difference. Sometimes change is not different at all.

The anticipation of Robert's diagnosis, its nearness, as it crept toward us or we toward it over the course of the last year, was worse than its actuality. Because it seemed as though something would change once we were sure. Diagnosis would be a tipping point--like something out of television or the movies, diagnosis being the point of drama that sucks the gut in and starts the tears flowing and the patient suddenly realizes (or his wife or the daughter or the niece or the helpful neighbor) that a curtain has been lifted and now Things are Different. Bidart has another poem in Star Dust about a veil, which is like a curtain, and the way a veil is a brink between imagination and realness, by which I mean that things are tangible. Or that we may recognize things by their tangible qualities. Realness, not reality.

Diagnosis is not tangible. Maybe it's a point in time, or some words on a lab report. Diagnosis is a label that goes on a bottle that already contains something else. Sometimes, diagnosis is a kind of magic that allows you to transform the contents of the bottle, sometimes it is not. But the bottle and its contents have been there all along, and maybe you know that and maybe you don't.

Sometimes change is not different at all.

And this seems odd. But that is indeed the way it is here, at my house. That Robert has a probable mitochondrial disease is helpful, because it allows us to understand what it is in the bottle. But it doesn't change the contents of the bottle. And it hasn't changed much of anything else, either: bills and school and jobs and grocery shopping and making weekend plans and all of that.

And there are times when I wonder if I am in some state of shock and don't know it. Because if an apt image is that cup of coffee, stirred vigorously, that is me looking back on something that I was. What I feel like now is the moment after the stirring stops and the liquid molecules go round and round for a while, but the vortex lifts from the bottom of the cup and its circles go wide and slack and suddenly everything that was set in motion is now simply drifting aimlessly.

And I'm wondering if that's a bad thing and whether I should be worried. At any rate, it is a feeling to which I am unaccustomed, and I find myself without many thoughts or much direction, really.

Explaining to other people what this feels like, this news, seems as though it might be the act of grabbing strangers on the street by their lapels and shouting, Robert has a diagnosis, into their faces, which would be quite wild with fear as, to their eyes, not a thing is going on. People understand the dramatic moment in the doctor's office, the shift from not knowing to 'knowing' what is wrong; they don't understand what it means to be spun in circles for 13 years such that the moment of knowing is spun out like a long, tensile thread from a spindle and distaff that no one will cut, not even the Fates. To be the weft and not the warp.

When we imagined change and difference, we didn't imagine this: a simple snipped thread. We, my husband and I, had this idea that when things were different, we could make 'plans.' Find direction. The way opens, as the Quakers say. And it's tempting to don the cloak of easy sentimentality and say that the way was open all along--just the way Glinda tells Dorothy that she could have gone back to Kansas all along, which felt comforting as a child, but now makes me wonder if the Wizard of Oz is sadomasochism all dressed up in green felt and red shoes and holding a wand for good measure.

The reality (or the realness) is that the only direction, all this time, has been Robert and his diagnosis, his medical care, his insurance needs, and it's possible that we have been driven so far down this path that there are no other markers for other trailheads.

Or maybe I'm just not used to things being at a standstill, and I'm dizzy from all the spinning. 'Plans,' I find, are impossible to formulate, just as it is impossible to formulate poems or make associations right now. I guess that would be the result of dizziness: an inability to find direction. An inability to find a metaphor as my thoughts, really, have not stopped--they're just still moving at speed inside my head, such that they are barely recognizable.

When we imagined change and difference, we didn't imagine this. So maybe our lives are an allegory of the Obama administration. Obama, who said yesterday, "I will not tell families with children who have disabilities that they have to fend for themselves." Just the branch to grab hold of as the great world does keep spinning, regardless of the directions we plot upon its surface.


Dale said...

I love the exactness of this: you have such skill at conveying emotional landscapes from high up.

I'm sorry though. It sounds damned, damned hard.

Elizabeth said...

I'm dizzy. I'm thinking of us, holding hands and spinning.

Autism Mom Rising said...

Spinning on that dizzy edge. Yes indeed. And then to ask, Well are there treatments for Mito, and then to be told yes and no - more soon though with research, we hope.

We have Alex's Mito testing this month.

Thanks for sharing!

A said...

We've been in and out and in and out of difficult diagnoses. Neither state has created an orderly extension into the future, not to mention peacefulness or certitude. I'm sorry to say that for me Obama's words don't carry much certitude either, in terms of action. It all continues to unroll or unravel, depending on perspective...