The Assembler of Parts: A Novel (3 page)

It is a game we play up here*, at meals or on walks or before the movies start: rank your doctors in order of preference. We all had doctors in life, some more than others, but all of us well acquainted with the disciples of life and living.

My list: Burke, Garraway, Marshall, O’Neil, Law, Martel, Zarur, Stein, and Shaw.

There were many others, but they played small parts in my life, my death.

Sean Burke and his kindness for my life was first, and Eileen Marshall of Cardiology, kind too, but in third place if only because her hands were cold, summer or winter— and she never let me warm them—and because it was her error that took my life at seven. But she ranks ahead of Pat O’Neil of ENT and Carmen Law of Nephrology, and Arthur Stein of Urology and all those others, because she made my mother and my father untroubled, at least for a while. Thank you, Eileen Marshall.

The doctors trailing Marshall, they were all fine. More cut and dried than the first three on the list, perhaps (especially that urologist Stein who took my kidney and left it in a jar like a pig’s knuckle in a saloon), but all fine enough.

Then there was Vincent Garraway, my geneticist. I loved him so, my number two. He knew so much and was so wise, had the softest of words and the sweetest of kisses. He was the only one, of all my doctors, who ever kissed me. He kissed me every visit. He opened my eyes with his kiss on my lids, but he opened my heart with his kiss on my fingers. “Good morning, my pretty little lady!” he’d say and take my hand to his lips. One, two, three, four would go his pecks. Only then, in the wish for a fifth touch of his lips, did I ever long for missing thumbs. Only then.

But if I kicked enough with feet and legs, he’d sometimes nod and smile and bend low to blow on my toes, to the blessed number ten. It made me scream, giddy with joy.

And if this were not enough to win me, here is what else he did: he made it possible for Mother to have another child! Through him, a sister to come out into the limelight, to watch over the stars and animals of the ceiling, to feed and sleep and stool and coo and be and be in love.

But that was not for some time to come. There was that first visit to me in the nursery well before there was little baby Jeanine. That first visit, not long after the inventory was nearly complete, organ by organ, system by system, exam by exam. It is all recorded on Tape #2.

I was on my back taking in the evening shadows spread out on the nursery’s far wall when he came through the door. The shadows were made by the sun’s push past the bird cutouts taped to the large western window to dissuade real birds from attempting to visit us babies.

I first noticed him when he stood with the shadow of a parrot on his shoulder. He was very tall and gangly and appeared in a sleeveless hospital gown with his slim arms at his side. The arms were bare and shiny and curved like cutlasses. He needed only a black patch over one eye to be a pirate. He waited by the wall, watching me watch him, until my mother arrived.

They talked for a few minutes before they approached my bassinet. Mother wasn’t smiling then, but there was a confidence in her eyes, a cross between acceptance and anticipation, maybe, or relief and determination. “Good morning, my pretty little lady,” he said taking my hands in his for the first time. It was a long way down to my stubby arms from where his mouth had dropped those syrupy words, but he came down like a graceful stork, regally closer second by second, and with his thin straight lips, he deposited his octuplet of baby kisses. I squealed and kicked and couldn’t control my roving, raving eyes until I was so out of breath I had to quiet. He began his exam just then and did again what all the others had done before, a search for holes denied or oversupplied, for bones amiss, unmatched and matchless. But more than any of his predecessors, he searched for something else, something in my eyes. Well, not
in
my eyes, but somehow
through
my eyes. Maybe good Dr. Burke had seen it too, that first night. But Vincent Garraway’s watery blue globes fixed themselves on my lumps of jellied coal until I thought they’d ignite in flames. I refused to turn away from his face with its long sharp nose and not-too-pretty ears and tarnished red skin and a mark like a splash of purple wine on his forehead. I wanted to study that stain because its shape promised a new and unusual landscape (in time I would find there a tiny salamander whose tongue was stuck to a frozen lamppost, but not that first visit), but I held his eyes with mine until he was done.

The upshot of his examination: my uvula was missing! Ha! The useless uvula missing! Very good news from Dr. Vincent Garraway. Apparently only the finest of singers suffer by the absence of the uvula. And that made no difference to me.

Final tally before going home from the hospital: two thumbs, twelve bones, one kidney, one uvula, and two holes in the heart.

Final words to my mother before Dr. Garraway left that night: “She’s a keeper, all right.”

He made me feel almost perfect.

T
he main advantage to a February birthday was the range of sweaters I could be dressed in. Mother had received at least a dozen baby outfits that included a sweater. Some were heavy and warm, made of scratchy wool; others were light and pretty, made of cotton or silk. The morning we left the hospital, on my fifth day of life, she dressed me in a bright red one that had tiny roses embroidered on both sleeves. She covered my head with a matching red bonnet and, heedless of my kicks, managed to stuff my fat baby hams into a pair of white tights.

Father took a picture of us that morning just before we left to go home. The room was festooned with flowers and balloons. Mother was holding me cradled in the crook of one arm, and in the other rested a bouquet of red and white roses. Her head was inclined toward me and she was smiling, with sunlight on her neck. It became our family’s Christmas card ten months later. I studied it many times as I grew older. I was five before I understood its powerful message. The sleeves of my sweater are pulled up to the mid-portion of my forearms. My baby-pink skin shines against the bright red silk. The looking eye notes that contrast immediately. The eye is drawn also to the hands, the four-fingered hands, the thumbless hands. There are two bouquets in Mother’s arms, her message to the world.

I was fast asleep the entire car ride home. The vibrations of the car’s engine were like a tactile lullaby, a vibratory hymn that tranced me and made me droop with sleep. I passed from car seat to crib this way, and not even a brief stop for a diaper change on the cold tabletop in my room could rouse me.

Hours later I awoke, rediapered, refreshed, and reflective on my back, facing the dollops and swirls of the yellow cream seas and ripe savannahs on my stucco ceiling. It would be eighteen months before the first elephant would materialize out of that primordial wavy landscape and months more before the lions and egrets chose to be seen. But now I had an ocean of waves, a plain of grasses, to scan. On the waters, I saw crests and caps, canyons and barrels, peaks like breasts—the only items of my newfound world that called me back to the hungry here of crib and home.

That first day home, my mother came to my call, looked into my large black eyes, and said, “Oh, so hungry from your baby dreams!” She put me to her breast. She rocked me slowly in the green-plaid chair while, all mouth and eyes, I took her in. She was wrong, though, in her view of baby sleep. There were no dreams back then when I slept, just the pounding dark and the faint wormy whiff of tunneled earth in my nose. I awoke from this nowhere five or six times a day, and went with my eyes wherever I could. There were so many worlds in my mother’s face, a dozen at least in her round brown eyes, a hundred in her smiles.

The day after discharge Mother dressed me in a tiny pair of denim overalls and zipped me up in a sort of burlap bag for transport to the office of Dr. Burke. I cried during the thirty-minute car ride because my chin was scratchy from the rough brown weave and my arms were held to my sides by the sack.

“What’s the matter with her?” Father asked, careful not to take his eyes off the road ahead except to glance anxiously in the rearview mirror at Mother and me in the backseat. His eyes progressively narrowed in discomfort as the noisy ride proceeded.

“Maybe I overdressed her,” Mother finally said as we entered the gloom of the hospital’s underground garage. She pulled down the casing’s zipper and my crying stopped at once. She looked at me with a face so full of self-reproach that I wished for an instant I had been born cry-less as well as deaf. Her index finger swept softly under my jowl and cooled my rough red skin.

“I’m sorry, baby,” she cooed at me. “I’m sorry,” and her fingers brushed away my pain. Father’s eyes in the mirror winced.

The visit was more than a simple follow-up with Dr. Burke. He had assembled the others in the tiny conference room that smelled like burnt rubber from the new tile floor (and still smelled faintly of that acrid melt seven years later at my final visit). From where I sat propped on Mother’s lap, the room itself held my interest only in the lattice of acoustic squares that made up the ceiling. Each taupe tile was punctured by thousands of holes and cuts and nicks. There were no breasts in this flat expanse, but as years of meetings went by in this same cramped room, I would stitch hole to hole and scrape to scrape to spy a horse, a crab, an archer, the ceiling having become my horoscopic heavens.

Burke spoke. The words are with me now*, but then* all I could do was note the face of my doctor as his lips moved and the augury of words dropped onto the shiny conference table for all to see.

He began by clearing his perpetually mucousy throat with a long, drawn-out “Knnnnnnn” that elevated his Adam’s apple toward his razor jaw. He said a word or two— “Mrs. and Mr. Jackson, good afternoon”—and repeated the cleansing grind of tonsil on tongue, palate on adenoid, and jiggled again the crab apple in his neck. “Thank you for coming.” Eileen Marshall wrote on a yellow pad, Patrick O’Neil yawned, and Carmen Law looked at his watch. Vincent Garraway stared at me and every once in a while wiggled his eyebrows or rolled his eyes. “We’ve all had an opportunity to evaluate little Miss Jess and we’ve discussed our findings as a group. We are pretty certain Jess has Hilgar syndrome. It’s a rare form of a larger group of congenital malformations called the orofacial-maxillary dysostoses. I’ve shared with you already Jess’s features that are part of Hilgar’s—her missing bones, her hearing defect, her heart murmur, her kidney problem. Today I want each of the disciplines involved in Jess’s evaluation to review for you its plan of care—what tests or treatments need still to be done.

“As Jess’s primary care physician, I’ll tell you that she’s going to need all the routine care any healthy baby will need—a lot of baby shots, good nutrition to foster growth, close tracking of her developmental milestones, and therapy for intercurrent illnesses—the colds and flus and intestinal stuff all kids get.

“My second role is to be the coordinator of her subspecialty care with the kidney, genetics, ENT, heart docs, and others. My main role is to be sure we don’t lose sight of the big picture of Jess as we go about caring for her blood pressure or murmur or whatever.”

I couldn’t see my mother’s face for my position on her lap, but I could feel the increase in pressure of her hands where they lay on my thighs. And I could feel through her dress her heart’s tattoo tick faster and her breaths grow shallower as Burke went on. Father sat stoically with his elbow propped on the table and his chin supported in the base of the L made by his extended thumb and index finger. It bothered me not at all that I would never be able to imitate that posture of nonchalant studiousness. I doubted my head would ever feel that heavy.

I brought my hands to the midline of my body for Dr. Garraway to see. He stuck his tongue out at me and flared his nostrils and winked. That did it. My tongue began to dart and dance inside my open mouth like the clapper of a church bell, and my arms and hands flapped and slapped in a shameless display of flirtation. He shook his head and chuckled. “So I’ll turn it over to the group here to make short presentations and then answer any questions you might have,” concluded Burke. He extended his palm toward the four physicians seated to his left.

Garraway made an effort to begin but Arthur Stein interrupted. “Do you mind if I go first? I have a patient in the OR in a few minutes.” Garraway nodded his assent. “Well, what you’ve got is a dysplastic kidney on the left. Her renal function is okay because the right is normal and unobstructed. But the left side has a duplicated collecting system and eventually will have to come out. We can hold off for now, waiting for her to fatten up and grow, as long as her blood pressure doesn’t go through the roof.” Stein stopped there to elevate his right hand over his head and to give my mother a quizzical, uncertain look. It struck me then that of all my physicians he was the only one who had never put his hands to my flesh in an examination, relying instead on the gray images his technician had recorded with an ultrasound machine. “If that happens, then we go. No questions asked. We go.” He checked his watch and looked to Burke. “You going to get into contact sports? Lacrosse and whatever, you know, with only one kidney?” Burke nodded gravely. “Good. Any questions?” he asked as he stood to go.

Father removed his chin from its cradle. “Well, how big or how old should Jess be before you do the surgery? I mean, is it something you would normally consider in a few months or are we talking years here?”

“Things go well, we’d do it electively at about age two. About two.” He took a step back from the table. “Everything okay?”

Father nodded and Stein left. “So,” said Sean Burke, “that’s the kidney. Dr. O’Neil, would you go over the issues about Jess’s hearing?”

Patrick O’Neil was my youngest-looking doctor. He had the boyish face of any number of comic book characters I would later have crushes on. It didn’t seem right to me that such a fresh-looking man would be so dour in his speech. He told Mother and Father that he would try to construct a middle ear that would transmit sound to my brain; that he would fit me with “acoustic amplifiers” to boost what sound made it through; that he was doubtful I would ever be able to master normal speech; that we, the entire family, should enroll in the state-sponsored programs for the deaf and learn American Sign Language. He shook his head as he concluded, “But it’s worth a try for the surgery when she’s a few months old. Assuming her general health permits it. That’s Burke’s call.” He scratched the tip of his nose with the eraser of a pencil and nodded in Burke’s direction.