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updated 10/8/2003 10:22:46 AM ET 2003-10-08T14:22:46

Take everything a mother is supposed to be, turn it inside out, and you have a pretty good idea of the strange disorder known as Munchausen by Proxy. It’s a form of mental illness in which a mother deliberately harms her own child to gain attention for herself. Usually, we only hear about it when a mother is on trial, often for murder, but now a new book offers a rare and truly terrifying look at this disease from an adult survivor of an accused Munchausen mother. Read an excerpt below from

THE PART I hated most was the shaving.

I mean, if you’re a twelve-year-old girl, how much hair can you have on your chest? But they’d lather me up anyway and run a new plastic Bic between my barely-there breasts. They needed me smooth and hairless so the little white pads would stick to those points constellated around my heart and record my beats. And while they were preparing, I’d hover above myself, intent on studying the nubby white ceiling tiles, imagining a room where I lived, inverted, upon the ceiling, away from the clutter of our trailer, away from the hospital—just floating in pure, white peace.

The scent of the shaving cream pulls me back down from the ceiling: It’s the same kind Dad used. Every day before dawn, he’d erupt in violent heaving and crawl off to the toilet trying to peel the Agent Orange from his lungs. Sometimes the sounds of his retching would come out the mouths of those elusive figures in my dreams, the worlds between sleep and wake merging seamlessly for a few groggy moments. He’d usually shave after he puked.

In an unspoken understanding, the examining room nurse folds a giant pile of cream from the can onto her palm, so much that as she smooths an inch-thick trail down my chest, our naked skin never touches.

Eventually the tide of Agent Orange would ebb and he’d lean dizzy in the doorway and say, “I’m selling Buicks, Sissy. Get it? Selling Buicks? Buuicck. Buuuuiiick.” Then he’d cackle and brush the back of his meaty fist across his mouth.

The nurse picks up a new blue-handled blade and runs it neatly down my sternum, slicing out another clean, pink row.

And what do you do at seven in the morning but laugh with your big, lumbering father, who’s pretending the doorway of the bathroom is a lamppost and that he, leaning on it like a drunk, is hawking Buicks in his best barker accent?

And then they’re done. The white pads have been spread with a clear magnetic jelly and pressed on to six different locations. Their wires run into one larger river of wires that flows from under my sternum down my abdomen, emerging out the zipper of my pants like I had some elaborate cable TV pay-per-view setup in there. The rubber-coated electrodes feed into a tape recorder that fits snugly into a rectangular leather harness; it looks like a purse. I wear the strap over my shoulder, and while my seventh-grade life ticks away, so do the heartbeats that go with it, right into the box.

For starters, I was a sick kid. Beanpole skinny and as fragile as a microwave souffle, I bruised easy and wilted in a snap. Kids in school used to walk straight up to me and ask point-blank if I was anorexic. But I wasn’t; just sick. And Mom bent over backwards trying to find out what was wrong with me. It wasn’t just that I had a heart problem. It was everything rolled into one, bleeding together with so many indistinguishable layers that to get to the root of it was impossible, like peeling off every transparent layer of an onion, and when I got old enough to peel the onion myself, every layer made me cry.

I was conceived in the sickly womb of a sickly mother—who starved herself and in turn starved me. She was highly anemic and blind with toxemia at the time of my birth—the result, she explained, of high blood pressure cutting off the circulation to her eyes. I was pushed into this world premature at three pounds seven ounces, an embryonic little bird, glowing translucently, and when they slapped me I didn’t even yowl. They thought I was dead. The doctor, holding my bluish body upside down by the ankles, took one look at me and said, “My, what big feet she has.” And then I was ushered into an incubator where I lay, as all embryonic creatures do, waiting to hatch into the real world, outside the bubble. After that, my health only balanced precariously on the edge of a “Let’s get to the bottom of what’s wrong with this kid” kind of existence.

There were early nose-’n’-throat flare-ups, loud belching that defied my delicate appearance, pesky and persistent migraines, swollen tonsils that fluttered a plea for removal whenever I said “Ahhh,” a deviated septum blamed for my mouth hanging open to breathe, and elusive allergies that forever deprived me of sustenance from the four basic food groups. As we got closer to pinning down my mysterious illness in the cardiology department, Mom moved into micromanaged health care with the logistical vigor of a drill sergeant.

“Look, dammit, this kid is sick, all right? Just look at her. And so help me God, if she dies on me because you can’t find anything wrong with her, I’ll sue you for every cent you got.” Mom’s face was long, her eyes diving into slits, and she had that little white blob of thick spit that always played on her bottom lip whenever she got upset. Her voice trailed after any doctor who said no more tests could be done, stalked him down the corridor, sliced through the silence of the hallway.

“Jeesus Christ,” she hissed, returning to the examining room, “I cannot believe that incompetent son of a bitch.”

“Don’t worry, Mom. It’s okay. We’ll go find another one.”

This is how I offered reassurance, by telling her we’d just keep going.

“Look, I’m trying to help you with this, sacrificing my life to find out what the hell is wrong with you. So stop fucking it up when we get in here by acting all normal. Show them how sick you are and let’s get to the bottom of this, okay?”

“Okay.”

We lived together day in and day out—me, Mom, Dad, little Danny, and then later, the foster kids—but Dad never knew I was getting my chest shaved. He was summoned by Mom with a set of “decent clothes” and the boxed white loafers only when a demonstration of fatherly support was paramount at a hospital. Otherwise, he was left to his back-to-back reruns of M*A*S*H, his red-stained pistachio fingers and mounds of empty nut carcasses piled high on his belly.

We lived in a double-wide trailer then, stuck on the dead end of a dirt road in a backwoods patch of Ohio; a wild, woolly green, lushed-out part of the country with roller coaster hills that held their breath in a Deliverance kind of way. I swear you could almost hear the banjos folded faintly into the breeze.

My parents had hauled their black velvet painting of Jesus crucified, with the 3-D blood from the crown of thorns blobbing down the side of his head, all the way from Arizona and then through the six other places we’d lived until we settled in the holler of Burns Road.

Our living room was outfitted with an early imitation-wagon-wheel velour sofa set, and Jesus hung against the burnt-orange velvet wallpaper, which had been pasted over wood paneling, so that the grooves showed through as darkened, hollow stripes. Sticky shag (as if someone had vacuumed up honey) swayed like undulating seaweed across the floor. Miniature concrete farm animals dotted our yard in pairs and groups—white baby chicks, mini cows with pink udders, roosters a-courting hens, a donkey in a sombrero—and when we were in town for my doctors’ appointments, Mom always kept an eagle eye out for additions to her barnyard collection.

I remember my dad then, manateelike; big, soft, scrubbed clean as if he’d just been run through a car wash on a La-Z-Boy gurney. Naked white skin stretched taut over an enormous belly, the pallor of sick clay. No hearing. No sight. No opinion. The dark living room of our trailer held nothing—-except sporadic uproarious laughter to the endless hijinks of Hawkeye and Hunnicut.

Once, when I was seven, I lay in bed drifting to sleep when Dad roared, “Siiissy! Siiisssssy!” I leapt out of bed, thinking “FIRE,” and tore down the hall in slippery full-footed pajamas.

“Fix me some toast, will ya?” Dad’s fingers placidly folded over his chest, thick calves propped up on the snapping-turtle hinges of the recliner footrest, he never took his eyes off the set.

Aside from trips to the doctor, we mostly stayed home in that trailer on the dead end of a dirt road, and there was a great gulf between how we really were and how we looked when we got out. I have a photo from when I was about eleven and Danny, my brother, was just four, when we drove up to Niagara Falls for a vacation. We’re in a fake wooden barrel that looks like it was careening over the side of the falls, and we each wear a smile that couldn’t have been more plastic than the water swirling around us. I am naturally blond by Clairol, wearing the latest in JCPenney pastels, and exuding happiness.

But happiness is relative when you’re twelve, sitting in a chrome-on-steel examination room, goose bumps giving you that plucked-chicken look, with a nubbly paper sheet tucked into your clammy armpits. Until now the answers had run like whispers over the hills just ahead of us. A little intermittent tachycardia here, some Marfanoid habitus there. Never anything code-red enough to get me completely, legitimately diagnosed. But they kept looking. Because Mom was positive that the answer was right there in my heart. A mother knows these things. She’s the one who’d see me go ashy in the face, she’s the one who’d take my skipping pulse, and she’s the one who watched the weight fall right off my bones, all the while my height skyrocketed. So that’s what flamed us onwards, after the answer. It was right there, just always right there before us, waiting to be sussed out, and then it would all make sense. And in some ways, she was right. But time might be running out for me, so when Mom insisted on another test and they wouldn’t do it, well, that’s when we’d get the hell out of there and try to find somebody who knew what they were doing.

My mother, Sandy Sue Smith, was married off by her mother at the tender age of seventeen to a man in his fifties named Smokey, who kept a carnival act on the edge of town. Smokey was a small, tight man with crisp tabs of sideburns that sliced down from under his curled black cowboy hat. He had trick riding horses, horses trained for the carnival ring, and he taught Sandy Sue to do outrageously dangerous stunts with names like “The Apache Flyaway” and “Lay Over the Neck.” After the stunts, Smokey would strap Sandy to a pegged wooden wheel, set it spinning, and throw nineteen-inch-long knives at her. And then there she’d be, having survived the ten sharp blades that jutted haphazardly from the cracked wood around her, smiling brightly with one leg cocked, like a model, a dainty hand flipped above in triumph. This was before she had me but I’ve seen the pictures and they are stunning: She stands tall upon the bare back of a wild, white horse blurring across a field, with a ruby-tangerine-streaked sky as the backdrop.

In another photo Smokey is snapping a twenty-five-foot braided leather bullwhip out toward Sandy, who stands pinned to the horse trailer with an expressionless face, the whip side-winding like a snake about to coil around her throat. They wear matching outfits of black-and-white yoked satin shirts with pearl snap buttons, silver conchs sewn down their trouser seams, and belt buckles the size of serving platters.

How Sandy ended up with Smokey goes something like this: She has a mother and a father and an older brother named Lee, who is a little off, wink, wink. The father ignores the family, keeps his attention on a gun collection stashed throughout the house. The mother, Madge, is from a clan of West Virginians who sleep with their own brothers and sisters and have cross-eyed children to prove it. Sandy is occasionally left with men that do terrible things to her in a shadowy basement. The father with the guns is replaced one day by another gun-toting father—only this time with a badge. He makes Sandy ride behind him on his motorcycle with his hand curved around and resting on her bare leg. He takes her to remote fishing holes with tall grass and the occasional fisherman who looks the other way. Two years later, Sandy walks in from school to find this new dad has stuck a gun in his mouth and blown himself apart right there on the living room sofa.

Madge has a tenth-grade education and has never worked a day in her life. There is scarcely ever food in the house. Sandy’s given no lunch money and by the time she’s fifteen, she’s famished. Sinking in on herself with malnutrition, she collapses on one of the floors she scrubs with ammonia after school. In the hospital she lies with pelvic bones poking through thin white sheets, while they feed her three meals a day. When she’s strong enough to be discharged, Madge gives her to Smokey, a man who lives down the road with horses and a farm, a man who can take care of her as well as he does his own cattle. And she climbs into his truck with going-to-girls’-town enthusiasm, lured by the promise of her very own horse. Off she goes with a man. It is all she’s known.

Years go by with Sandy strapped to the wheel: white leather, showgirl’s smile. Coal black hair separated down the middle into leather tunnels that lace up the side in Indian squaw fashion, accentuating the trace of Cherokee blood that gives her the high cheekbones and blushed full lips. She runs alongside as her gift horse tumbles into a full gallop, grips its long, flying mane, and then, clutching the horn, springs into the saddle with a panther’s grace, pushing to balance her way up until she is standing tall while the spectators cheer. Still running at a breakneck speed, she plunges under the horse’s belly and thrusts her arm out in performance-style splendor, ta-daaaaa. This is the Russian Death Drag. She has captured an audience and, for the first time in her existence, something other than a life, a body full of pain.

Excerpted from Sickened by Julie Gregory Copyright© 2003 by Julie Gregory . Excerpted by permission of Bantam, a division of Random House, Inc. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

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