Study in Perfect (5 page)

Like any action with an equal and opposite reaction, temptation has its consequences. Perhaps the apple and mushroom aren't really that far apart; they both promise godlike, forbidden knowledge. And they both come with a caveat: possible death. The mystery comes in our knowing the odds and choosing to taste anyway. We are the only animal whose imagination encompasses both transcendence and death. Yet we go for it. We taste.

Early Danish records raise the possibility that Elvira never saw what was coming. She was discovered in a position that suggested
she was shot while sleeping, and her sisters claimed Elvira was a practical person, more interested in fleeing circus life than in falling so devastatingly in love. Quite simply, she saw Sixten as her passage out. To those who knew him well, the dashing lieutenant was far from the romantic hero exemplar. He was cynical, wasteful, a man with a serious gambling problem.

Despite all this, the doomed couple entered romantic mythology forever. The legend of two attractive young people who abandon social responsibility, defy moral convention, and finally die, all for illicit love, proved irresistible. We want to remember their story as Dickinson recalled her duplicitous mushroom: “The surreptitious scion / Of summer's circumspect.” Perhaps we've stepped over some threshold of risk ourselves, bending to touch something taboo, intoxicating, lethal. Or if conscience and better sense prevailed, we at least want to read about it, listen, watch, and whisper the story to each other, not necessarily in warning, but in forbidden pleasure.

The tale of Elvira and Sixten became a ballad, composed by Johan Lindström Saxon. The couple was buried together in 1889, in an unmarked grave in the Landet churchyard in TÃ¥singe. When Bo Widerberg's film made them famous, a small marker was installed where, according to custom, new brides place flowers for the wedding bouquet that Elvira never received. It's a lush, photogenic spot lined with small pebbles, lots of shade, and gray-green lichens. When the rains come and conditions are just right, perhaps an amanita will surface—ghost in a veil, destroying angel, “its whole career,” as Dickinson observed, “shorter than a snake's delay.”

Having both stamens and carpels,
present and functional.

I saw a photograph of the pregnant man. He'd (she'd) undergone testosterone treatments, shaved off his long black hair, grown a sketchy mustache and beard, but somehow left his (her) uterus intact. He and his female partner appeared on
Oprah
and in the pages of
People
magazine. Their child was due in a few months, though the couple would not be feeding the baby in the natural way. The photo clearly revealed a pair of lateral sickle-moon scars where his breasts had been surgically removed. Transgender groups everywhere were not pleased, said the public was not prepared for so radical a sight. There would be a casting of stones, and who knows what else.

A perfect flower in botanical terms is bisexual, a hermaphrodite. The female sexual parts include eggs, ovary, and style. Most resemble a suction bulb, with large swelling at the base, a stalk, and a froth of pollen-hungry styles at the tip. The male
parts look like tiny reflex hammers and consist of anther (tip) and filament (stalk). A lily in the wild is an ideal, a beautifully structured thing, even more so when viewed under a magnifying glass.

The man is to flower as gossip is to teach.

The Changeling

 

Beckie was born in 1960, unplanned, the last in a string of five daughters. As an infant she was sweet, sleepy, and undemanding. The family was smitten; mother nursed, nuzzled, petted her new baby, and her sisters happily accepted a warm and pliant version of their stiff plastic dolls. At seven, I was the eldest and most eager for attention; I fought to hold her, twisting toward my father's Rolleiflex. Photographs from Beckie's early years show an adorable, fluffy-haired child, four girls bent protectively around her. The crib was pulled out of storage and reassembled, baby clothes reclaimed from the dollhouse. Plenty of love to go around.

Not until six months did our parents admit something was wrong. Baby books are filled with penciled milestones. Beckie's was virtually blank. No enchanted gaze following a red teething ring, no head held up decisively, no rolling over, no sitting, no creeping. Finally, they sought help.

Physicians at Johns Hopkins University sketched a dismal picture: The child was born microcephalic, profoundly retarded with traces of cerebral palsy. Like the bound foot of a Chinese princess, her brain was in a tiny box and could advance only so far. Developmentally, she'd never be older than ten or eleven months, if that—a baby before it learns to feed itself, walk, speak, use the toilet. They advised institutionalization.
My parents shot back:
Impossible
. And so, with doctors, friends, and relatives shaking their heads in collective disbelief, we began life with our healthy-daughter-sister-imposter, our changeling.

It helped that she was sweet, with radish cheeks. Mother effortlessly lifted her from bath to changing table to crib. At three, she could have been an off-the-charts baby, big for her age—that was all. A halo of dark brown curls gave the impression her skull was normal in size, and as for her eyes, sailing about, guttering near her nose, everyone knew someone with a wandering eye. She never cried, even when we lifted her smocked sundress and found a purple knitting needle puncturing one thigh. This little girl was no mistake, no accident. She grinned easily, and the milkman, postman, and all kinds of strangers made pleasant chirping noises at the sight of her.

Tenderness and light: Mother in blue jeans and poor-boy sweater gliding between sink and high chair where Beckie gnaws her terrycloth bib. Mother chops little squares of liver sausage, Edam cheese, banana, and Cheerios on a small cutting board. In one generous motion she spreads them across the plastic tray like a salesman with his samples, and Beckie reaches, lifts them to her face, her chopstick fingers scissoring. Our Westie sits in a hopeful posture beneath her chair. He knows the routine. Next spooning the applesauce, pudding, oatmeal into her mouth, catching the half that dribbles down, then spooning again. It's a serene moment: eating is Beckie's pleasure and Beckie's eating is my mother's pleasure. We girls banter and spin happily around this quiet corona.

Touch of gloom: It's naptime, which mother will get to when she finishes the dishes. Meanwhile, Beckie sprawls diagonally
on her back across the kitchen doorway. In one hand, a plastic bottle of milk, which escapes her sawing fingers and rolls away. As I step across her I notice she has stopped reaching. Her eyes are creamy white with a poppy-seed speck in the center. Something is wrong, very wrong. Her eyes have rolled back into her head. She's at the bottom of a white lake, blinking. She's
blind
. I scream for my mother, who swoops in with a rag, irritated, dabbing, tsking. “It's just milk. She missed her mouth. That's all. Now go find something to do.”

If my parents felt unlucky, misunderstood, unfairly burdened, I never heard. If there was guilt or anger or desperation, all was withheld, reserved for the early morning hours when the girls were asleep in every reach of the house from attic to basement. When they awoke, the house bustled. Beckie in the high chair, Beckie on her rubber mat, the sour smell of used diapers and Desitin, which mother applied to both rear end and face. The clamor and lineup for “hair-fixing time”—five girls, two braids each. Or “stair-fixing time,” when we removed the newspapers, books, toys, games, sunglasses on three flights of steps, cleared out a safe-walking zone. Or laundry—clean diapers folded into thirds stacked almost three feet high. Beckie's laundry occupying half of the couch, the remainder, everyone else's. Our parents persisted, buoyant and conscientious, chasing what they thought was best for Beckie.

In the midsixties, this meant embracing the techniques of Doman and Delacato, scientists at Johns Hopkins. Their theories were a pragmatic elaboration of a much older notion, that ontogeny (or the stages of an organism's growth) recapitulates phylogeny (the evolutionary history of a species). Crawling, creeping, crude walking, and mature walking, in that order,
mirror the process of human evolution from amphibian to reptile to mammal. A mentally retarded child, they reasoned, must master this exact progression if she is to develop normally. Treatment, known as “patterning,” required the patient to move repeatedly through the physical motions of each phylogenetic stage. For example, in the homolateral crawling phase, the child crawls by turning her head from side to side and extending the leg and arm of the opposite side. If she cannot do this herself, three to four adults must manipulate the movements for her. The purpose of the exercise was to impose the correct “pattern” onto the central nervous system. Doman and Delacato's claim was that mentally retarded children could improve, even progress normally, as long as the exercises were repeated for at least five minutes, four times a day.

Four times a day, volunteers from all over the neighborhood knocked at our double front door and made their way up to Beckie's room—Yenta and Gretchen from the downstairs apartment, Georgia and Nancy several blocks away. We girls filled in when there was a vacancy, and there was always a vacancy. We lifted Beckie onto a folding table and stationed ourselves: the youngest moved her head, the other two worked her limbs. And all rhythmically, as if she were a rowing machine or printing press. Yenta taught us Yugoslavian rounds and everyone sang with the forced cheer of camp counselors. Patterning punctuated our day: morning, noon, afternoon, and evening. Under my hands I felt Beckie's chapped skin, hair, thin wrists and thighs, which I noticed grew more and more muscular as the year wore on. But little else developed from our family's extraordinary effort.

Normal babies use Jolly Jumpers, cribs, walkers outfitted with wheels and toys, and then only briefly. But no home of a profoundly retarded child would be complete without:

The Creeping Box
. Built by my father from scrap lumber and padded vinyl, with eight-inch “walls” on each side. Both ends were open and one was propped up so Beckie could use the box as a kind of chute, slide down on her belly, accelerating her creep across the floor. My little sister Jenny played there and remembers the box sensually—shiny orange fabric that clung to her skin in the heat, a secret place for Chatty Cathy and her friends.

The Helmet
. Padded inside, black leather out, a pliable hardhat designed to protect her skull. When Beckie learned to sit, legs straight out in a V, she also began to bang her forehead, bending from the waist, knocking repeatedly
thud thud thud thud
against the floorboards. No one knew why, but we'd heard even normal kids did it sometimes. We bought an extra helmet, which she dangled from one hand like a big black yoyo.

The Bed Bars
. These were anchored underneath the mattress with two long stay rods, when she grew too large for a crib. One morning, we found her pulled up to a standing position in the bed, both hands wrapped around the top bar, ready to pitch forward on her face. Another time she wedged a leg underneath the lowest bar, which pinned her facedown against the mattress. My father dragged a dresser over, flush with the bed, which now resembled a fortress.

One bright afternoon, mother stood at the front door, shaking her keys. “Want to go outside? Outside?” Beckie balanced against my sister Kim, who held her lightly under one arm.
Nancy was stationed halfway to the open door. Again the steel rattle of keys, Mom's high soprano—”Outside? Outside?” In the excitement, Beckie forgot she was holding on to anyone. She flung one leg out, hauled the other along, uneven this, jerky that, right, left, like a robot on ice. Down the hall she came on her own two feet. She lurched past Nancy without even looking, then tumbled into my mother's arms. Her first, magnificent steps. She was six.

What I remember is vertigo, a sudden swooping back, as if I were perched somewhere above the crown molding. So this is what she looks like vertically. All her horizontal oddities were exaggerated, with a few new ones thrown in. Beckie like a drunk flamingo. Beckie with her hands dangling from her wrists, one elbow cocked up, the other tight against her chest. Her body was a jumble of sharp angles, the chaos before the tent poles go up.

What were we clapping for? Was something fixed? Would everything turn out all right now? My mother's face was radiant.

There are numerous, often cruel labels for someone like Beckie—backward, handicapped, mentally challenged, simpleton, imbecile, tard, freak, slowpoke. I don't remember what my parents called her, but during the sixties the PC expression was “exceptional,” with its upper-crust implications. That was an
exceptional
dinner. He is an
exceptionally
handsome young man. As if we could alter the troublesome deficit by dressing it up in an evening gown.

I was an enthusiastic reader, impatient with abstraction and inaccuracy, and therefore chose to call my sister what she was—mentally retarded. Before my friends could ask, before they set
foot in our front hall, I prepared them. For Checker Ives in her handmade miniskirt and fishnet stockings, for socially prominent Bridget Walker, who fell silent when she saw my sister's sloppy lips pressed up against the window, I held my hands up, one above the other, miming a diagnostic chart. “Here is a ladder with four rungs,” I explained. “Mildly retarded is at the top—those kids are lucky—then moderately, severely, and last of all, profoundly. My sister can't even reach the bottom rung. She's microcephalic. IQ of about ten months.” Why not admit it right away, rather than suffer their confusion and stunned embarrassment? I cultivated a circle of friends who knew my story from the inside. Birdie Mintz's brother was mildly retarded. Frances Strong's little sister had seizures. Birdie and Frances and I found each other, or we were nudged together by our parents, I don't remember.