Sunday, July 26, 2009

That I may see thee

One image that rises to the surface now is a brightly lit hospital room on the pediatric floor at Georgetown Hospital. In most of my memories, the rooms there are shadowy--perhaps because we had the overhead lights off during the day--or the room are dark and lit by the glow of the box-shaped light over the bed and the green and red lights, the blue glow of the monitoring devices.

But in this memory, the room is very white-bright.

I think that Robert had stopped taking food and liquid by mouth--he ate and drank, very feebly, for a year after his break-down. We spent two hours or more on each meal. Obviously, I was not working then. One little bit of feta cheese to the lips, push it in, see if he could masticate it without spitting it out by accident, and so on. Followed by an 8 oz. bottle of PediaSure, which took him close to 45 minutes to drain.

Robert did not gain any weight that year, and he barely grew in height and head circumference. One day, at the end of a long week of spending most days trying to get much food in him at all, he just refused to open his mouth at all. All day.

Moving to artificial intake of food, that is, nasal-gastric tube, then gastric tube feeding, was psychologically difficult. The bright reds of tomatoes, the texture of rice, the colors and shapes of other foods were still there for us, but gone for him and replaced with an oily, thick formula the unpleasant smell of which was covered up with artificial flavoring, that odor that tries too hard to be something it is not.

We are in the brightly lit hospital room and we are reasonably happy because the introduction of an n-g tube has animated Robert's frame. Now he's getting enough calories and fluid and he's lively and interested in the world around him again. A bright yellow tube is taped to his cheek and snakes into his nose and from there down his esophagus and into his stomach.

In retrospect, the introduction of formula in large quantities must have given him, for a while, larger doses of the vitamins that address his apparent metabolic disorder. Because he's talking--saying a few words, or fragments of words. We have a plush wind-up frog with which we are amusing him, and he's saying '-ggie,' '-ggie.' He also says a garbled phrase that he repeats enough that we can untangle the sounds and realize he's saying, 'I love you.'

So we are ecstatic. Within a few weeks, though, this ability recedes.

And even more painful than losing the ability to eat, to take food by mouth, is the corroded course of his communication abilities. When he had enough of whatever vitamins were missing (or whatever genetic mechanism was held at bay), a curtain lifted and we could see that he retained something of language, something of understanding and expression. It was there all along, but hidden from our view, like a scene taking place backstage.

Enough has happened that I am sure Robert understands what is said to him. In fact, listening is his most critical sensory in-route. When his eyes can't follow, when his body stays in place, his hearing is like a purse-seine that gathers up the room, catching all of the brightly flickering words like small fish, and reeling them in.

While his hearing is as fluid as water, his expressive language is like a fish flopping on a deck.

Robert's most functional expressive communication strategy is to raise his right hand for yes, and his left hand for no. At times, we've looked for even the smallest flicker of motion in either hand.

These days, he is consistently able to raise either hand upward from the elbow, with a certain sweep and fluidity. But other motions--extending the arm forward, moving the hand from side to side in a fanning motion across a level surface, picking up the hand once it has been set down and setting it down again (and repeating), uncurling the fingers, unbending the wrist set at a downward angle--these are inconsistent, sometimes impossible, and nearly always excruciatingly slow and terrible to watch.

Think about pushing a button in order to communicate, or choosing between two or four buttons. Every day, all of us make this motion over and over again--elevator buttons, doorbells, computer keys, blender buttons. Some of these targets are small, some are large. None of us think about it, but the ability to press buttons or choose among keys to press rests in an ability to make all of the micro-motions described above. Fluidly and without thought.

Robert finds all of these difficult or impossible on any given day. Even with the help of devices for the disabled: large red switches, six inches in diameter, that depress with the slightest touch; in-line communicators angled upward at about 30 degrees with variably colored square keys that require just the corner pushed down if that is the only effort that can be sustained.

Touch-screen computer-driven devices are out because he drags his hand as he moves it, if he can move it. Even now, I am still briefly flustered if I press the wrong key on my computer and the whole screen changes. Drag the hand across a touch screen and all sorts of unintended effects occur.

Over the last few days, as we've gone down another little notch on the metabolic cocktail, Robert's spasticity has decreased. And he's had a considerable amount of fluid movement with his hands and arms--for him. So I dug out the Cheap Talk four-inline communicator (which is not at all cheap). I recorded some messages on it--four. I set it in front of him.

And for five days running, he's been practicing hitting buttons, his fingers curled into his palm, his thumb tucked under his pointer finger, the knuckle of that finger pointed down to compensate for the angle of his wrist. He's had side-to-side movement across the top of the keys. He's been able to use either hand to reach at least two buttons over, sometimes three. And, best of all, he's had the ability to lift his hand, put it down, pick it up, put it down, and do that repeatedly. For years, he's been stuck after one, maybe two repeats of a movement like that.

I started my little test with trepidation, not knowing when this, too, would recede. After one day? After two? Even today, when his arms were tense and tight for mysterious reasons, pulled tight from the elbows and the elbows like a circumflex away from his torso, he could still muster some effort to move the hand and wrist just a little, just enough, if we put the box in just the right place, to depress the buttons.

Each button says something to which another person can respond: I love you, I need some love, I am Superman, look at me, ola Dan & Nikki, and so on the phrases have gone. He likes this ability to say something, even if it may not be what is actually on his mind, even if he continues to be the kid behind the curtain of my voice.

In Discoveries, his commonplace book in which he works through issues of language and rhetoric, Jonson writes, "Language most shows a man: speak that I may see thee. It springs out of the most retired, and inmost parts of us, and is the image of the parent of it, the mind."

Jonson is probably channeling Quintilian's Latin. Not translating. Channeling. But what of it--I am channeling Robert and he is channeling me. And every once in a while, this mimetic curtain parts and he is there, himself.

4 comments:

Maggie May said...

The intense ability of a keen intellect to unwrap and understand, measured next to the inability of the human heart to accept suffering or loss in those we love.


Beautifully expressed.

( I wanted to recommend lef.org
to add to your arsenal of research- they are amazing )

datbot said...

This piece is so gentle, so loving. Sad, too, but that falls away. One of my favorites. Thanks.
br

Elizabeth said...

This is such a beautiful evocation of what it's like to have a nonverbal child -- I've always struggled to express similar thoughts -- thank you for doing so for me.

kate hopper said...

This is so lovely, and I'm tearing up. I just can't help it tonight.