TUESDAY WAS MY DAY OFF. That Tuesday I stopped at the diner on the way to the train.
I was always a good waitress. When I had to leave the Sea View a month before the baby because of some law about lifting and stuff, Billie said not to worry. I could come back whenever I was ready. She raised my pay, too, so I could afford the old lady I’d lined up to watch the kid. It turned out I didn’t need the old lady, but Billie gave me the raise anyway when I came back.
Billie must have been surprised to see me but she only asked did I want a cup of coffee.
TESS IS PRETTY. The feeding tube entering her body near the mid-line provides every nutrient a two-year-old has been discovered to require, even a two-year-old who cannot talk or walk or for that matter make any purposeful motion, though she does hold up her wobbly head, and she will more or less clasp an offered finger. Another tube burrows through her chest and into her superior vena cava; outside her body this line is connected, through a cheery plastic device, bright aqua, to four more tubes drawing essential minerals from translucent bags. Nourished abundantly, Tess has round limbs and plump cheeks. Pretty.
She is pretty also because of her hazel eyes and she is pretty especially because of her eyelashes: long, brown, and curly. These lashes could adorn royalty. She is sometimes called “Princess” by the staff. Tess is pretty because of her translucent pallor, alarming though it can be. After a transfusion she is pretty in a party girl’s way, as if she has been lightly rouged.
I DIDN’T WANT COFFEE, just wanted to lay eyes on big old Billie. So I stood there. She said nobody would take me for thirty-six in those jeans and that leather jacket, why didn’t I get me a student pass for the train, whack a student or something. Both of us laughed.
I never knew how long two years was until this two years.
TESS’S SPARSE SILKY HAIR, washed daily and kept trimmed by one nursing assistant or another, is the same brown as the lashes. The nose is merely a blunt little wedge. But the mouth is gorgeous, the upper lip with its two peaks resembling a miniature suspension bridge. A designer lip, thinks the nursing student who is selecting Tess’s wardrobe today (a light rose top and a deeper rose bottom and lime green socks; this nursing student has a flair for style). Tess’s lower lip creases into two tiny pillows when she frowns, and stretches into a crescent when she smiles.
The smile … It is a curious thing, that smile. It seems responsive, seems to mimic a smile initiated by someone else, anyone else, anyone who accompanies the greeting with a hearty gesture, bending or even squatting beside Tess’s wheeled padded chair. Strangers, unaware that Tess is deaf, talk to her in standard baby. “Heartbreaker,” they wheedle. “You adorable girl,” they pronounce. (Tess’s gender is unmistakable; all her garments have ruffles.) “You have exceeded the cuteness quotient,” said a pharmaceuticals representative who met Tess in the lobby while she was on an excursion to its tropical fish tank. Tess smiled. Her friends—she has innumerable friends within this hospital, her home since she was medevaced from the seaside hospital she was born in—her friends know she cannot hear, but they talk to her anyway, for to see faces in action, lips moving, is instructive for Tess, according to the neuro-audiologist. Tess smiles at these efforts, too. She smiles also at toys placed on the tray of the special stroller—a yellow plush rabbit with black felt eyes; a plastic merry-go-round that revolves whenever somebody pushes a button. But she has been seen to smile at no one and at nothing: carelessly, even mindlessly it is feared, her head against its supports aslant like a chickadee, or like a robin, or—one much-traveled resident thinks to herself—like that flirt, the ostrich.
This resident possesses a dangerous combination of optimism and inexperience. She is one of the few people around Tess to imagine the child’s future—or, more accurately, to redesign it, for each of the caretakers imagines it. But the resident—she has plans. Knowing that Tess’s neurological deficits are multiple and tangled, the determined little doctor reads history after case history. She thinks about what she reads. She is thinking now while supposedly snatching a much-needed nap in the on-call room. Elbows on the desk, slender brown fingers probing her dense hair, she thinks about clever neurons taking over from failed ones.
I LIKE THAT SLOW TRAIN. It goes from town to town, and at the first three stations you can still see the ocean. Then the train runs behind pines like the ones in Maine. I was born in Maine. It runs past factories. It stops in the city.
I got off there, in the city.
I was scared, but I didn’t turn back.
THE RESIDENT THINKS about synapses creating themselves; and she remembers that there are areas of Tess’s damaged brain that have not yet been fully scanned; and she says to herself that until Tess reaches some plateau—and she’s not there yet, she’s still climbing—why, no cap can be put on her progress.
The older doctors are less sanguine. Neurological deficiencies united with gut deficiencies make a grim prognosis. These physicians doggedly do their jobs. The neurology attending follows the case. He may write a paper; no name has yet been attached to Tess’s particular agglomeration of troubles. The surgical attending replaces the feeding tube when necessary. She works with speed and grace. The tube is Tess’s lifeline: she will never have use of her upper digestive tract, never be able to employ her mouth for eating or drinking, never bite or chew. Nonetheless—the dental attending reminds the nursing staff, his pale eyes intense—the twelve teeth Tess has already sprung must be brushed frequently with a little stick tipped with foam rubber, for despite the inutility of the tiny incisors they are subject to decay. (Also they enhance her smile.) The infectious-disease attending—who at this moment is scowling at another child’s lab report floating from the printer—prescribes for Tess’s frequent infections. He is a Bengali trained first at home and then here. Even as he battles the microbes that invade Tess, he wonders, as if from afar, which one will carry her off. Already there are antibiotics that, for her, might as well be barley water. “She is a fly in our web,” he said once to a nurse, surprising her not only with the thought but with his clipped voicing of it. He is usually so silent.
The case of Tess is discussed periodically by the staff, with at least one of the weary attendings present. When immediate concerns about Tess’s condition have been voiced—“Her cranial circumference is not enlarging,” the resident reported yesterday; “Hmmm,” said the neurology attending—the talk turns to her near future, to her disposition, to her removal from the unit, from the single-crib room containing Tess-specific toys, mobiles, and that padded stroller; containing, also, amenities common to all patients’ rooms: giraffes prancing on a frieze; a window looking out on other hospitals; television, sink, wastebasket; hamper for dirty linen; bin for dangerous waste; and, attached to the wall above the crib, a box of rubber gloves. There’s a bathroom for the use of parents and guests. Tess’s bathroom is entered by the cleaning person every morning, and by her mother, who visits once or twice a month these days, though in the beginning she came more often.
IN THE CITY I waited for the subway. I lit up, and a black girl in a uniform told me I couldn’t, but she was nice, she let me finish the butt. The subway came. It was after rush hour but still crowded, so I hung on a strap in front of a woman and her two children. They were cute, Mexican maybe, such big eyes, and I made funny faces at them so they’d laugh. But the mother went stiff, so I stopped. I looked at myself in the black window. Round head, round glasses, buzz cut. Maybe Billie thinks I look like a girl that’s still in school but I think I look like a boy that’s turned eighty without ever growing up. There’s a disease like that. I read about it once.
I always liked to make funny faces at kids.
EXCEPT FOR THE CLEANING PERSON and Tess’s mother, no one uses the gleaming bathroom. Tess’s father, who had no fixed address at the time of Tess’s conception, had left the state altogether by the time of her birth. The cost of the child’s residence here, the cost of her care, the cost of Tess—this is presently borne by the hos
pital. The cost is one of those enormous figures flung by newspapers at a horrified public. To the accounting department Tess is an impressive statistic. To the hospital counsel she is always a worry. And today she is a task.
What else can I do? the counsel asks aloud, partway through his draft. Alone in his office, he directs his question to Tess, seven floors above. The Utilization Committee is breathing down my neck. Two years. Those pricks can count.
There have been efforts to move Tess into a facility. A facility is certainly her destination if she continues to live. The Sisters of Evangelista would take her, would love to take her, would love to love her; but they are not a hospital, and their medical services are unequal to the demanding body of this tyke. The bags hanging from Tess’s pole must be continually replaced; the cylinder of nutrients attached to the feeding tube likewise. And the places where she’s pierced must be kept uncontaminated; and physical therapy must be performed; and visual stimulation … Tess needs expert servitors. Loved by the Sisters, she’d be dead in a week.
So how lucky Tess is, thinks one of the nurses, who is Tess’s primary today, and is gently swabbing the area around her feeding tube … how lucky Tess is to make her home in the unit, with its trained staff. Here she sees dozens of smiling faces. (Tess now smiles at the primary.) Here the practiced hands who tend her do so unresentfully, for they tend not only Tess but also patients who howl, who hurl little fists, who fiercely suck bottles and pacifiers; who vomit and hiss and grow quite red in the face; whose harelips get fixed and whose stomata get repaired and whose bacterial infections succumb to medications and whose viruses succumb to the passage of time; who often get better; who at last leave, though they may be back. (Tess scowls.)
I TOOK THE ESCALATOR up from the subway. The wall there got decorated by kids from some art school. They used bottle caps and other junk they found. I always touch it. My friend the wall.
When I got off the escalator the bus to the hospital was just rolling up.
I didn’t turn back then, either.
Billie says you can always count on me.
CLOWNS SASHAY INTO THE UNIT on Tuesdays and Fridays, and every day there are volunteers to wheel the child into the activity room so she can look at other children. Other children look at her. They find comfort in her placid refusal to make noise, in her willingness to share toys—that is, to have a toy snatched from her tray and replaced by a different toy. One thing is as good as the next to this little girl who has never grabbed; who has never sucked; who will never—thinks the fashion-minded nursing student with sudden envy—feel envy; who will never—the exhausted resident may be forced to conclude—discriminate between Tess and non-Tess.
Today’s volunteer, understanding Tess’s limitations, is nonetheless hopeful that the soft fingers curling around her own extended forefinger, with the chipped peach polish on its nail, can be induced to grasp a plaything, a hollow plastic chicken drumstick from the Let’s Make Dinner set. It lies now on the tray of the special stroller. Tess, seated in the stroller under the scepter hung with bags, has accepted the substitution of drumstick for forefinger. She is slumping. The volunteer wonders if the supports are properly placed, but her heart sinks at the thought of lifting and readjusting child and tubing. Instead she edges the drumstick along the tray, Tess’s four fingers still surrounding it (her thumb does not oppose, or at least not yet). The drumstick, a ghastly yellow, at last reaches the charming mouth with a little assist upward from the volunteer’s chipped nails. Tess’s lips part at the drumstick’s kiss.
Want, the volunteer silently begs. Want.
Along comes a nursing assistant who bends down and blows at Tess’s hair as if it were a candle, and Tess smiles in the warm breeze
… Next week, the volunteer promises herself; next week we’ll work on the thumb.
In fact, even without the aid of her thumb, Tess’s limp fingers, encountering her feeding tube, sometimes weakly tug on it. The primary nurse and the fashion-minded nursing student comment on this later, when they are readying Tess for a nap. They confer bleakly about the possibility, in a month or two, that Tess’s aimless pull will be just strong enough to cause discomfort and even to do damage. For now, though, clothing snapped around the tube deflects the incompetent hand.
Sometimes she has trouble going to sleep. She whimpers, cries a little: a soft wail that she herself cannot hear. The nursing student would like to stay with Tess—would like to pick her up and cuddle her, an intervention that is performed many times during the day, not just for Tess but for all the little patients, the fussy and the bored and the hot and the insomniac, by volunteers and nursing students and nursing assistants and nurses and once in a while by residents when they are too tired to do anything else, and even by attendings. The infectious-disease attending, his glasses two gold circles and his mustache one black rectangle, has sometimes been found in a chair rocking a feverish baby, as if this effort and not the IV febrifuge would bring the temperature down.
The nursing student, raising her eyebrows at the primary, reaches toward Tess. The primary shakes her head, and covers Tess with a light blanket. “Princess will comfort herself.” The two women leave the room.
When the cleaning person enters, pushing his mop and bucket and trundling his supply cart, he finds Tess still awake, though no longer whimpering.
I WENT INTO THE HOSPITAL. Those crazy fish, flipping around in the tank all day. I took the elevator upstairs. Then I sat down. When she was born I couldn’t tell there was anything wrong with her, though the doctor knew, right away. “I have some concerns, Loretta,” was what he said. They rushed her down the hall. They were going to operate then and there but they decided to send her here in the chopper.
TESS IS LYING partly on her side (a rolled baby blanket props her back). From this position she can see a mirror hung on the slats of her crib, a mirror which reflects her visage. It is claimed that babies as young as three days recognize the presence of eyes. Tess’s mentation is far above that of a three-day-old infant—the staff would rear like warriors were anyone to suggest otherwise. And indeed an expression of soulfulness passes over her face whenever she sees it mirrored—an expression of further soulfulness, that is, for her eyes and mouth always suggest soul, to the staff’s relief. The lashes, however, sometimes make her caretakers uneasy. There is not a woman connected with the unit, from the surgeon to the volunteer, who has failed to wonder at the assignment of these eyelashes to this young lady: an example of the profligacy or carelessness of Whoever’s In Charge. And yet every woman, and every man too, has also at some time privately praised the assignment, for although the staff would be attentive to an ugly child—they are already attentive to ugly children, to children whose features have been flung any which way onto their faces, as if by a raging Hand—still, comeliness inspires a tender leap of the heart, a frisson of identification, softening the shackles of Tess’s imprisonment, easing her warders’ vigil.
I SAW THE CHOPPER FROM MY BED. I had signed the permissions. By the time I got to the city, two days later, in Billie’s car, with Billie in her baseball cap driving, my child was hooked up to about a hundred machines. “Is it a baby?” Billie asked. “Or is it a sprouting onion?” You’d think that would have made me mad, but it didn’t, it made me feel better. Billie always has a handle on things.
After a few months there were only two tubes, the feeding one down below and the one that stuck right into her heart. The medicines from all the bags went through an aqua thing that looked like a clothespin and then into the heart tube.
So I could sit and hold her. One day I held her too tight and something tugged and I found out ten minutes later that the tube into her heart had gotten loose from the clothes-pin and instead of liquids going in, blood was coming out, slowly though, there were just a few splotches on my skirt, but the nurses said they had to flush the line. One did it and the other watched.
THE CLEANING PERSON dutifully scrubs the rarely used bathroom. He mops the floor of the r
oom. He empties the wastebasket into his rolling cart. And then, just before leaving, he pauses.
Tess is still gazing into her own eyes.
The cleaning person, like the infectious-disease attending, is Asian; but whereas the doctor was born in the Subcontinent, the cleaner hails from the Pacific Rim. He has five children. They are all healthy, and they go to school every day—except perhaps for the oldest, who leaves the house at the proper time but with a secretive look in his eyes. Nonetheless, no bad reports have reached the father’s ears. The cleaning person is grateful for his children’s health, for his job, for the United States of America, a country which rescues its ill babies and repairs its malformed ones, sometimes (he has heard) before they come out of the womb—such meddling, he doesn’t understand it.
He has known Tess for the two years of her life, and he considers her beauty angelic. Angelic beings, he knows, need no justification for existence. (Unlike the infectious-disease attending, whose belief system does not include the heavenly Hierarchy, the cleaning person is a devout Christian.) But Tess is not an angel, despite her looks; she is a human, despite her flaws; and he has overheard (his English comprehension is good) that these flaws will be the death of her. In his country, if Tess had been born at home she would have been allowed to die. If she had been born in a hospital, she would have been helped to die. Why you here? he wonders. Pain and death and sorrow he understands as part of the design that God has created—but life like this?
The eyelashes lower. The cleaning person pulls off his thick yellow gloves and puts on a pair of thin rubber ones from the box on the wall and runs his protected finger down her plump cheek, once, twice, three times, recklessly, for such a gesture is against the rules and he would be reprimanded for making it. It is hard to know, though, who among Tess’s overworked court of doctors, nurses, nursing assistants, and volunteers; not to mention directors, Utilization Committee members, accountants, and the fellow who removes dangerous waste—who would bother to chastise him. Anyway, the cleaning person caresses her cheek unreproved, and tosses the rubber gloves into the wastebasket, and shuffles into the corridor.
Binocular Vision: New & Selected Stories Page 12