Jeneva Stone
(1999) 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 turned off the overhead lights during the day—or the room is 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, my son, now two years old, had stopped taking food and liquid by mouth—he ate and drank, very feebly, for a year after what was an undiagnosed breakdown. We spent two hours or more on each meal. 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 eight-ounce bottle of PediaSure, which took him nearly forty-five 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.
* *
The mouth imports food and exports speech. Robert could do neither. The small cache of English and invented words he’d drawn together by the age of one were missing, but not gone, the net loosed and the words floating like deep-water fish in the depths of his consciousness. He still had things to tell us, but only gestures broke the surface: his eye gaze, his smile, the varied pitch of his cries, and the contortions of his face.
In Explorata: Or Discoveries, his commonplace book on language and rhetoric, Ben Jonson writes, "No glass renders a man’s form, or likeness, so true as his speech. Nay, it is likened to a man: and as we consider feature, and composition in a man; so words in language: in the greatness, aptness, sound, structure, and harmony of it." As we now say, you are what you eat.
Renaissance poets liked the analogy, lifted from Classicism, you are what you say. They might have said we each have a speaking style and wear it like a brightly colored cloak: some styles are high and noble, some of an ordinary stature, some humble.
* *
Moving to artificial food intake, nasogastric then gastric tube-feeding, was psychologically difficult for us, although it saved Robert’s life. The bright reds of tomatoes, the texture of rice, the colors and shapes of other foods were still there for us, and visible to him, but the substance was gone, 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.
What food meant changed for all of us. For Robert it became the language of his birth, now foreign to him, but the taste of which came back now and again. For us, my husband and myself, cooking became the late-evening ritual we performed with care once Robert was safely settled, as when parents spell words so their children will not understand.
* *
One of Jonson’s most famous poems is, “On My First Son.” I once wrote a paper analyzing its metrics and concluding that its use of single syllable words made it a flexible dramatic address. I noted that the possibility of variable inflection, the shifting shape of metrical feet, made line six, the line with the greatest emotional tenor, unstable, precarious, and yet beautiful in its apparent rejection of Classical rules of meter:
Farewell, thou child of my right hand, and joy;
My sin was too much hope of thee, loved boy,
Seven years thou wert lent to me, and I thee pay,
Exacted by thy fate, on the just day.
O, could I lose all father, now. For why
Will man lament the state he should envy?
To have so soon ‘scaped world’s, and flesh’s rage,
And, if no other misery, yet age!
Rest in soft peace, and, asked, say here doth lie
Ben Jonson his best piece of poetry.
For whose sake, henceforth, all his vows be such,
As what he loves may never like too much.
I taught this poem when pregnant with Robert. Note the seamless merging of filial and parental identity in line ten. Take the last line as a warning.
* *
We are in the brightly lit hospital room and we are reasonably happy because the introduction of an NG 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.
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, which 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.
In retrospect, the introduction of formula in large quantities must have given him, for a brief period, larger doses of the vitamins that address what we now understand to be a probable metabolic disorder.
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 the failure of 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.
* *
(2001) At Bread Loaf, I listen to a lecture by a famous poet. She delivers an intelligent and carefully composed speech in which she analogizes something about poetry with the development of speech in children. I don’t remember the connection she drew to poetry because I could focus only on her assertion that the ability to speak, to process the world into language, is the primary turning point for a child, what makes a child fully human at last.
Years later, I try to remember whether she had, perhaps, been arguing that language is, in fact, adequate to describe experience. I wonder whether I believe that as well. But what if you have experience and no language? Can you be translated, or must translation depend on two known lexicons?
* *
(2009) Enough has happened that I am sure Robert understands what is said to him. Speech therapists call this receptive language ability. 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 helpless 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 slightest sideways shift 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 among two or four buttons. Every day, each of us makes 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 rests on 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, like large red switches, six inches in diameter, that depress with the slightest touch, or in-line communicators angled upward at 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 unintended effects occur.
* *
When we began giving Robert large doses of the vitamin biotin, his spasticity 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 (surely an augmentative technology joke, as it is not at all cheap). I recorded some messages on it—four —then set it in front of him.
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 repeat. 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? But even 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, hola 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.
* *
I decide that language must be adequate to describe experience, if only for the simple-minded reason that I would like to believe my son’s life, if not his lips, has something to say, or that I can convey my son’s essence to someone else. But if I make of Robert a fixed point in language, dress him in words, I’ve still built and decorated only his exterior, the interior mutable in all of its forms and expressions. Robert’s experience is still backstage, and he can ‘say’ only the stage cues, recorded in my voice.
* *
Jonson’s ‘best piece of poetry’ describes a dead child.
In Discoveries, 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? Perhaps I am channeling Robert and he is channeling me. Every once in a while the mimetic curtain parts and he is there, himself.