The Assembler of Parts: A Novel

PART ONE

THEN* AS NOW*

1

ALMOST PERFECT

Iforgive him. I forgive Dr. O’Brien, now*, forgive his thought as he laid eyes on me. After all, he was the very first to see me, varnished with glossy vernix and tarnished with rusty blood, worming my way out into the lance of his light, and I’m afraid I took him by surprise. I see his big hands on my head, cradling it gently like a priceless gem or a barely hot baked potato. He eased it down toward the floor a little, as if he wanted me to see something important, his blue paper shoe covers or the marbled pattern on the hospital linoleum or the drops of episiotomy blood that had collected in two intersecting pools like the symbol for infinity.

But I was allowed only the briefest look, because the perfect pair of shoulders I had been awarded by the Assembler scraped clear of my mother’s springy pubis just then. They popped free, announcing their beautiful symmetry, just as Dr. O’Brien was giving me a look at the ceiling. Nothing much there to see, really, so unlike the stucco ceiling that would be in my bedroom, above my crib rails, with stars that glowed at night and animals that sprang from the ridges and savannahs of plaster during the day. The rest of me—what there was of it—was quick to come then. He lifted me out—chest and belly, arms and legs—gently as a flyfisherman easing a speckled trout from the stream.

His first thought: My God! She’ll never hitch a ride home.

I forgive him.

I was born without thumbs, the four blue fingers of my right hand even in the cold of the delivery room trying to hang on to the folds in the sleeve of his green OR gown as he suctioned my mouth of the gobs of my mother’s secretions.

I forgive him, too, the slight, boneless wavering I then felt in his one-armed cradling embrace. It was just for a second as he jiggled the red rubber tip of the bulb syringe in my mouth, trolling for the bite of my breath, but I felt his arm go slack as if he’d rather not be holding me at all. I was not a sparkling trout, but an alien spider crab or scary scorpion fish, instead. The fingers of my hand tugged a tiny pleat in his sleeve just then, and even before I spit out my first mewling cry, his arm tightened. I grew used to that—how I could pull people back to me with tiny claw hands after they’d first turned away, wanting to let go.

I forgive him for that slight sag in his arm, his soul.

I knew I had cried by the look Mother gave Father—the quick turn of the head from her hard concentration on her supernova’ed perineum to smile at him. It is a good thing to have here* in heaven, the first memory of your mother smiling through the pain.

I knew I’d cried by that look of relief on her face—My baby’s breathing! My baby’s breathing!—but I could not hear in all its lionesque claim on life my roar made of baby’s breath, the fierce bouquet of cries I presented the world. One needs ears to hear, ears that are more than the pretty pink spirals the Assembler had so nicely stuck to the sides of my head. One needs passageways and pearly membranes, ossicles that clang with sound in the cleft of the skull and set up tides of noise in the canals of the brain. These parts I was not given.

My newborn cry was for others to hear, not for me.

Still, I looked cute in the pink blanket and cotton cap the nurses fitted me with against the chill of the delivery room. The cap came down to the tops of my ears, each perfect as a coiled nautilus but without its sweet-salty susurrus. But, now*, watching my birth, I know the day will come at twelve weeks when my quiet conches fill with the sea’s loud tumble, speech. The surgeons would see to that, slicing through my silence and fitting me with aids. Then, words would sink through gelled fathoms to reach me. J-l-e-a-s-s-h-h! I would hear my mother say that day of surgery. S-h-w-e-e-t-a-r-h-h.

I would have seven years of double listening with my eyes and with my ears to the lips of the world. My glossy black eyes read the purse and pucker, my electric ears heard the pulse of lips, and words were born in my missing parts. I took them in, tasted them, and they were sweet enough to kiss. But they nourished my voice poorly. My thin newborn cry would never fatten normally on the dumpling coos, the buttery ahs, the syrupy sweetheart Jesses that the lips of my world served. I could see the words leaping from mouths, could hear them thrashing like hooked fish in the dumbing weight of the sea, could taste them all with my lips. But I never could fully digest the alpha, the beta, of the soup of sound. I would grow fat on a slaw of slurred words and sunken sounds. It would be a peculiar kind of plumpness I would grow, turns of fat around my neck, lumps above my knees, clots between my tiny toes. The doctors told us it was part of my syndrome. I knew better. It was love. And my voice shared in this comic dysmorphism, words emerging from my throat with bloated middles or overstuffed suffixes or mountainous prefixes—like pastries made by psychotics. At seven, I told Cassidy, Chewww’l ah-bya okay. It made him stop crying and put down his glass and kiss me. It really did. And he really would be okay.

*

All the perfect sounds came to me at seven, when I died. The Assembler saw to that. They came like a swarm of honeybees and filled my ears full of honey buzz, all the words, all the songs, all the laughter and sighs, speaking perfectly at once. It was good because the perfect words also brought me my new svelte voice. Which I bring to you now*. More work of that artful Assembler who replays my life for me now* so I see it all as a piece, so I hear it all with His air ears.

I would like to say I first met Him, the Assembler, yesterday*. At least it seems like yesterday* when His brightness woke me. I was somewhere alone in a dark and tiny place, then here*, bathed in His buzzing bright whiteness that got in my ears like the sand at the beach. But instead of that gritty itch I’d felt before, now* there was a sweet, resonant, humming tickle of sound. He stood before me and smiled at my amazement. Watch, He said, and the whole black vault above filled with the images of my birth. Film, the First, He said grandly, in the review of your life.

As I watch, I am here* and there*, I am then* and now*, at once observer and performer, naive child and evolving cosmic consciousness, one and the same. It makes me dizzy, watching. It makes me long for the simpler stories off the flat pages of brightly colored books I so loved in life. But I review my life with my new ears, my eternal eyes, my perfect voice, as if I am living it both then* and now*.

I am bold enough to ask, Assembler, what is it I search for in my life? Why do You show me my birth and the doctor’s faltering? Is it so I can forgive him, as I do forgive him?

What was hidden from the wise, He tells me, has now been revealed to the blind!

Blind? Dare I tell Him? No, not now*, not yet*.

It’s a girl! Dr. O’Brien said to my parents after examining my genitalia in the light of a lamp like an exploding star. I felt as if I had eclipsed my mother, my bright sun of a mother, put between her and that blinding lamp. Call the pediatricians, he whispered to the circulating nurse as he double-clamped my wormy cord and snipped me free to squirm in a heated blanket.

My mother had my papoosed body in her arms. Her face was flushed from the final push of placenta. But the faint pink blush around her mouth was pressed away by her wide smile, a smile that never faded, not even when Dr. O’Brien said, from the crux of her limbs, Kate. Kate. I have to tell you. The baby . . . she has no thumbs. He stood there so tall, so still, lost in the whiteness from the light.

Jessica. Jessica Mary, is all she said to that, to me, and her smile warmed me softly. I felt the hand of my father on my knee. His finger made tentative half circles on my blanket. I would have regarded his face then if I could have, but the transfixing stare of a smiling mother is something all-entrancing. We regarded each other—I, her sweaty pinkness, her Chiclet teeth, her crinkled eyes; she, my coal-black globes and womb-squashed nose—even as the nurse took me away to be studied.

Well, examined, really. Under the bronze glow of a radiant warmer in the newborn nursery. The nurse with her cold hands set me free of my cotton confinement, free to wiggle my ten toes and eight fingers in the exploration of face and flank and fanny, the latter graced with the briefest of my tender touch when she flexed my legs from the matting to introduce me to the rectal probe of her plastic-sheathed thermometer. To this day* I fear that kind woman mistook my thorny shriek for a cry of pain, when in fact it was pitched jubilation; the joy in the little things, holes and tubes and skin! Rejoice, my cry announced, there is a way in and there is a way out! But she heard my quick exclamation and placed her free hand on my head for comfort. I felt the heat go out of me into that cold palm. I reached with my hand and hooked her thumb with my forefinger. The timer beeped, my temperature done, but the nurse stayed in my grasp until her hand glowed pink with my warmth. Then I let her go.

The doctors came. They were the first of what would become a white-coated invasion of my life, seven years of Viking raids on my body and my blood, parts of me carried off to other lands, made to work in the labs of the world in the service of science. I didn’t really mind. There was so much of me to share, to spare. I let them all have their way with me.

The first was Dr. Burke. He was younger then. His face hadn’t yet grown the furrows where seeds of concern would sprout, seeds planted by me and a host of other patients. He stood over me as I bathed in the warm glow of the heater with one hand behind my head. What he said tasted like a sweet, cold drink. Well, look at you, young lady, catching the rays during spring break! Young lady—I liked that so much that, when it came time, I helped him hold his stethoscope against my heart. It was near midnight when he arrived. Bedtime Listerine was still fresh on his breath.

What did he find in his half hour of poking and probing, tapping and listening? Or more importantly, what did he not find in that trove of organs that was my seven-pound, four-ounce, skin-wrapped self? My unhitched thumbs were the easiest to see—or not see. But a certain spongy give in the outer aspect of my forearms led him to suspect, and later confirm by X-ray, the absence of the radius bones that normally attach at the base of the thumbs, the thenar eminences. He used that word thenar in his rambling description of his findings to the intern standing with him. Thenar, a word that tastes strange to me, hollow and empty rather than solid and full. Thenar. Thenar. Even now* when I look at my hands, I taste a shallow scooped hole. Thenar. Even now*, with thumbs, Thenar, you are a cave.

Other bones omitted from the box: the ossicles of the middle ear, three pair of bones the weight of a mouse pellet. Too tiny for the Assembler to see, perhaps? The end of a busy week, tired? A Friday afternoon job, bleary-eyed? Who’s to say? But I do know this. Those were all that were amiss in my skeleton—a dozen bones—two in my limbs, four in my thumbs, and six in my head. Twelve missing out of a total of how many? Two hundred six in the human body. My skeleton was ninety-five percent perfect, and I was pleased.

Not so Dr. Burke. He squinted, he puckered his lips, he shook his head. Looks like a syndrome of some sort, he told the young doctor standing now on the other side of my warmer. The intern yawned. When Burke found the blind-ending pouch that should have been my external ear canal, he scratched his crew-cut head and queried, One of the oral-facial-maxillary dysostoses, maybe?

Now, that’s an eyeful to choke on, I thought then* (or I think now*, it’s so hard to sort it all out, then* and now*). Sometimes associated with renal, rectal, and vertebral anomalies, he went on. His hand pressed my belly—left, right, up, down, shallow, deep, deeper still. All that work to announce: No palpable masses. He gave me my first taste of popsicle stick while he inspected my mouth. He puckered my lips with his thumb and forefinger and inserted the wooden blade. It tasted slightly sweet, but I lost that thought to the click-and-clack feel of stick on stone as his probe found teeth: four teeth to be exact! Of all things, to get some extra teeth. A consolation prize. A makeup gift from the Assembler upon the discovery of His bony lapses.

Not to be. The Assembler giveth and Burke taketh away. He pulled them, then and there, right before my first attempt to suckle. He pulled them with forceps that looked like needle-nosed mosquitoes come to suck my tongue. All to protect me from an early death, should those teeth wobble free, lodge in my airway, and close it off. Oh, the irony in his care.

I tasted blood, my own, before my mother’s milk. The intern yawned again.

I confess to falling a little out of love with Dr. Burke just then. He tried to see my genitals, but I pushed my thighs against his pries, and peed. And cried, and peed again against his reprise. Excellent, was all he said after he’d won the contest, but I was unsure what he was complimenting, my plumbing, my strength, my will. He flipped me over onto my belly and pinched my buttock. I fought with all my strength for position as that sharp press spread into me, and I cried. I rocked and flailed and raised my head. I squirmed and pushed with my four-fingered hands against the taut bedding, trying to roll my rump from his next attack. I managed only to turn my head from left-looking to right, where I could watch out of my upper eye for the next descent of Burke’s rude pincer grasp. Instead came a gentle pat, a soothing rub, on my small round mound of rear, and the words, Sorry. Sorry, little baby. . . . Excellent motor response, he added, turning to catch the intern in another gaping yawn.

So there I was when Burke had finished with me: blood on the tongue, urine on the tush, and twelve bones short of perfect. (The next day a kind lady would rub warm cream over my belly and collect pictures of my kidneys. A sweet irony here: the kidney is a bean-shaped organ, and my left one was barely a nubbin of tissue the size of a bean, a kidney somehow damaged during assembly. Such good news, though, because the other was perfect, one million nephrons bundled together like an endless collection of roller coasters for my urine to ride until it found the exit. All you need is one kidney, and I was blessed with it.)

I wonder to this day* where those four teeth went, if they missed the slippery swipe of my tongue and the syrup of my gums. I know where that left kidney wound up. Or the half of it not put on slides for the pathologist to gaze at. It sat in formalin, in a black-capped jar in Burke’s office, next to my picture when I was almost two, the photo taken on the day I was discharged from the hospital after my surgery to remove the dysplastic renal tissue. It was the best way, the doctors told us, to treat my high blood pressure. And it worked. I wore a new red sweater the day I went home, a gift from Dr. Burke.

When Dr. Burke was done, a warm-handed nurse wrapped me tight in a baby blanket and wheeled me away to my mother’s room. The hall was hushed and dark, but the nurse’s lips moved a song my way as we went. It was too dim to catch all her words. Something about Tom Thumb and a plum.

My mother was sitting in bed, crying, when I was wheeled in. Dr. Burke was at the bedside speaking, and my father stood opposite him with a look on his face that could only be called grave, though here I was, alive and happy to kick, if someone would merely unwrap me. But Mother was crying in the room’s blue fluorescent light. She dabbed her blue-stained tears with white Kleenex. I was struck by the reversal in the order of things: from joy to sadness, from whitest light to dull blue glow, from radiant smile to limp, handheld flags of defeat. She wept in pain before her jubilant baby daughter. Crying, sad, because of me.

Dr. Burke was telling her of my missing parts and of the plan afoot to search for other errors in assembly. He paused for a moment so Mother could blow her nose and unfold another hanky from the packet she held pressed to her right breast. Before he could resume his discussion, I began to cry. I listen now* to that cry. It was a looping cry that began low and rose in pitch, hovered there and swooped back down only to rise again, my hold me cry, rude and crude for lack of practice. Back then* in that dim room I couldn’t hear its songful beauty, but Burke’s good ears deciphered it immediately. He walked over, his neck-hung stethoscope swinging like a metronome to my rough music, and scooped me up from the bassinet. He laid me on the pillow where my mother’s head had lain and unwrapped me. I could smell her sweat, and the warm honey-scent of my mother’s hair, as if it had hived a hundred bees. He made a show of my hands to Mother and Father. He had her press my forearm like I was a cake tested for doneness. I was spongy to the gentle press, and her tears only increased through this inventory of missing parts. When Burke slipped her pinkie tip into the blind pouches that should have been ear canals, her sadness became a moan. Father was stoic, his back straight, his arms fixed at his sides, a man with a stiff upper lip and a stiffer skeleton, bone on every bone. He cleared his throat and asked, Does this mean she can’t hear?

Probably it does, said Burke. We can do some hearing tests to be absolutely sure, but most of the time this external anomaly is associated with absence of the bones that conduct sound. So I’m sorry, but yes, there is a very good chance Jessica is deaf. But ear surgeons can do wonderful things now to correct some of these defects, to restore some hearing, so let’s wait and see what they have to say. I think they’ll figure a way to give her some auditory capability. And with the new generation of hearing aids, well, there’s a lot of hope here, is what I’m trying to say.

Father’s bones seemed to age as his shoulders sank. He took Mother’s free hand in his. Kate, he said. This isn’t what—

Burke interrupted. Look at her eyes, Kate. Look at them. They’re looking right at you, and they are beautiful. Really beautiful.

Well, I was, and she did. My black eyes locked on to my mother’s blood-shot browns, and we stared at each other for a while. Her tears stopped, and her moans. I reached out with my right hand and scraped the blue air. She offered me her index finger, and I perched my fingers and hand on it like a bird on a branch. Aren’t they the most amazing coal-black eyes? Burke asked. There’s so much strength in them. Don’t you think? In that instant Mother managed a weak smile, a shadow of the one I’d seen after delivery, but a smile nonetheless. I forgave Dr. Burke his every transgression, his pinch of my skin and his pinching of my tiny teeth, and fell in love with him all over again. He made my mother halt her tears; he lighted her with smile. I never could hold a grudge very long.

But I could hold a finger. I squeezed Mother’s with all my neonate might and tried to coo. It was even more imperfect than my hold me cry, but Mother smiled again. She looked at Father and dropped the words, Jessica is beautiful, don’t you think, Ford? Even with everything, she’s beautiful. She looked back to me and I kicked with my legs.

Father’s frame lost even more of its bone. His head hung down like a shamed child’s. Without looking at either of us, he whispered, Yes, and released Mother’s hand.

I hung on to the other with four fingers.

In the newborn period the mouth is dry as baked clay, unless made moist from the plucking of teeth or the sucking of teat. By that moment in my mother’s room the thin roots ripped away had ceased their bloody seep and again my mouth was all sand and talc. It is a circumstance, I think, well intended by the Assembler whose aim is to fix us with a constant thirst, to pucker us always for the wet sweet weep of mother’s milk. She put me to her breast. My mouth seemed me, all of me, more than me, as I tried to latch on to the milk nubbin she cradled me against. But at my first attempt, my lips closed before my tongue had settled. I squirmed and sucked but managed not a drop. She gently pulled me off and brought me back, but my tongue would not stop its useless flick, and my lips lost the way to a perfect seal. Away again and a pat on the back. A third attempt came so very close—a drop of colostrum before my tongue lost its way. My mouth seemed me, all of me, more than me—it was all thumbs.

We switched sides and tried again. This time, it was a piece of cake. I nursed her to sleep on this second sweet breast. Her heart tapped me kindly to keep me awake all the while I sucked. She awoke to find my black eyes studying her face. Such a beautiful face, my mother’s. She smiled.

I left my droopy-eyed mother a little while later after I had mastered her other breast and had lain warm and content with my cheek on her chest. The nurse entered the room and watched me watch my mother’s slow breathful rise. She took me up and placed me in the bassinet, leaving my mother content to rest after her labors.

In the nursery I was reintroduced to the rectal thermometer. Not to be outdone, my infant bowel presented the world its first stool. Meconium, as sticky and greeny-black as that dark name suggests. My nurse withdrew her slender probe and said, Well, aren’t you the best little one! Something inside me deep as the roots of the rose knew I was. I slept well that night in the silent nursery.

There were more tests and examinations in the next days. Many more. I helped the lady cardiologist listen to my heart. I held still and tried not to breathe too fast as she positioned her cold stethoscope and colder hand on my chest. She had words for all the sounds of the heart. They fell from her lips to my eyes and to my mouth, and they were so hard they hurt: aortic, mitral, systole, diastole, shunt, murmur. I tried to help her hold the metal disc of her stethoscope, but she moved my hands away. Her quick touch was like ice. Then she wiped her hands on her nursery outer gown. It stung to see her do that. But so ardent was she for the sounds of my heart, so much did her eyes register nothing, for her ears were her full self as she stood with black tubes in her face and caught my noises and dropped them back out of her slack mouth, that I forgave her wiping and tried not to breathe. She was the first to hear the sounds of my true heart, its leaky swirl and swish, and was true enough herself to whisper them to me. So I rolled my fingers into bird fists and lay on my back. I waited for the shape of words from her lips to fall at me. My hands unfurled like flowers to catch them. I knew not then the fruit of those sad blossoms. It was a good thing, really, not to know.

The pictures she later took with her echo machine told the story of my sounds without words. The holes not given to my ears had somehow been mounted in my heart. Ventricular septal defect, atrial septal defect. The Assembler napping on the job again, not quite finished with the knit of tissue to quarter my heart to chambers, upper, lower, left, right.

The tally grew: two thumbs, twelve bones, one kidney, and two holes in the lace of the heart.

The news she gave my mother, though, was excellent. The heart would likely heal itself, knit up those tiny leaks and silence those puny squeaks, and if not, at age seven the nimble surgeon would sew me up. Until then I would carry a noise like a shout in my heart, one I could not myself hear but which, in quiet moments as I fell to sleep, I could often feel athump and aswish.

Good news, very good news, indeed, what the heart lady said. But in the end, the news was not wholly true. The telling was a kindness told so she, or we, would not lose heart.

In my newborn life, sound traded places with scent. I couldn’t hear my own belly rumble or the rocket burst of a good burp or the fresh squish of a seedy stool. They come back to me now*, those thousand intestinal voices, in a grand chorus of music that takes my breath away. But then*, in noiseless life, those functions of the body announced their presence in the world with their own perfumes. But my noisy, soundless heart’s perfume I did not, could not, share. It lay furled inside my chest like a flower never bloomed, a petal case for fragrance only I could breathe. It was there as I fell to sleep, that scent pulsed out into my nose by the soundless thump, the quiet swish of an imperfectly quartered heart. It smelled like earth, rich and damp and deep. It smelled like the tunnels worms make.

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