Sickened: The True Story of a Lost Childhood Read online

  “[Sickened] lacks the usual ‘woe is me’ victim tone. Gregory takes action, gets help, re-establishes a connection with God—and now is an advocate for Munchausen victims. She's a talented writer and a strong woman.”

  —USA Today

  “A tale of courage, endurance, and real horror.”

  —San Diego Union-Tribune

  “A born storyteller with perfect pitch, Julie Gregory guides the reader through this surreal form of cruelty, in which the ultimate weapon is the scalpel, with originality, gusto, and heart-stopping courage.”

  —Sylvia Fraser, author of My Father's House: A Memoir of Incest and of Healing

  “This story of unfathomable child abuse is told with remarkable wit, compassion, and courage.”

  —Augusten Burroughs, author of Running with Scissors

  “Gripping self-disclosure by a remarkable young woman … Sickenedwill surely and finally impactthe proper diagnosis and treatment of children caught in the terror of MBP.”

  —Chris Monaco, Ph.D., Director, Childhelp USA National Child Abuse Hotline

  Foreword

  MUNCHAUSEN BY PROXY may be the single most complex—and lethal—form of maltreatment known today. It is formally defined as the falsification or induction of physical and/or emotional illness by a caretaker of a dependent person. In most cases, the perpetrator is a mother and the victim is her own child. Baron Karl von Münchhausen was a real historical figure, a soldier and an adventurer of the eighteenth century who became notorious for his outrageous stories. In 1951, a British physician borrowed the baron's name and introduced the term Munchausen syndrome for people who feign or produce illness in themselves to gain sympathy, nurtu-rance, and control over others. In turn, MBP was coined to describe those who use a substitute or “proxy” for the same reasons. Most cases of MBP go unreported— indeed, entirely undetected—due to the covert nature of the maltreatment. A recent study indicates that when a case of MBP is finally recognized, up to twenty-five percent of the sickened child's siblings have already died— most likely earlier victims of the perpetrator. Only when the same pattern of symptoms appears in the second child of the family, or the third or fourth or fifth, have professionals and legal authorities been forced to realize that motherhood can twist into a strange illness-related type of abuse that, unlike battering or sexual violation, defies ready categorization. Even though the FBI has been vigilantly aware of MBP for several years, Munchausen by proxy is still a public health tragedy that, paradoxically, has been largely hidden from the public.

  I entered the strange world of MBP begrudgingly. Having been primarily interested in Munchausen syndrome, I was reluctant to enter the difficult and troubling arena of child neglect and abuse. However, being a “Munchausen” expert meant attempting to master its variants; it meant wading into the waters of child protection despite the fact that MBP perpetrators almost invariably deny their actions, even when caught on tape. I have since consulted and testified nationally in numerous MBP cases, often before judges and juries who are dubious that such a bizarre form of abuse can even exist. I have discussed the syndrome in my own books and in chapters for books by others, and have answered over a thousand related inquiries through telephone, mail, and e-mail. I have worked in the field of MBP essentially every day for over a decade, and it still breaks my heart.

  One day, while trolling the Internet for links to expand my website, I came across a new and important perspective on MBP. A woman named Julie Gregory had launched her own site where she shared aspects of her MBP victimization through vivid writing and moving photographs. She described her interest in writing a book and I e-mailed my encouragement, thus beginning a relationship that has culminated here.

  In Sickened, we get an unprecedented look into the experience of MBP. There are over five hundred clinical articles and books on the subject, but until now no one has told the full story of MBP from the inside. Julie Gregory grew up not in a playground among friends, but in the weirdly structured and antiseptic world of doctors' offices and hospitals. Her life was completely focused on the falsely constructed world of her various “illnesses,” and the caregivers and doctors who might have nurtured her were co-opted into damaging both her body and her soul. Indeed, doctors are the unwitting accomplices in MBP, conditioned to have blind faith in what they are told by patients and families. It is undeniable that what a parent says is usually the best guide to what's wrong with the child, so it takes an enormous shift in attitude for a physician to accept that the stories ring untrue, that the test results are normal, that no treatment ever works, that no amount of testing is ever “enough,” and that the parent is more accurately called a perpetrator. Of course, the best lies are the ones that mix fact and fiction: children can show real symptoms, yet how they are created can remain conveniently undisclosed.

  A parent can be ruthless in her quest to garner emotional satisfaction from the ailments of her child. She needn't be highly educated, only persuasive. If MBP perpetrators find that interest is waning in their drama of “selfless” caretaking, they can move on to new audiences: new hospitals, new emergency rooms. They often scour textbooks or the Internet for medical information to enhance performances that could put any good actress to shame.

  As Julie got older, it might seem to the reader that she colluded with her mother in misleading doctors. Did she? Never. She was simply overpowered. How can a child counter a mother's total self-absorption, an impenetrable world that is a whole unto itself? We know that even adult MBP victims may not disclose the true sources of their illnesses out of fear of abandonment or punishment if they stop being sick. Other elements creep into the MBP picture, such as Stockholm syndrome, epitomized by Patty Hearst's adopting the cause of her violent abductors: Children often protect their abusers and resist making revelations to the very medical and social service personnel who could rescue them.

  Sickened does not consist of unreliable memories recovered through hypnosis or a therapist's leading questions, but of events that were never forgotten—a blessing and a curse for Julie. They were further validated by Julie's compiling the whole messy, disturbing stack of her medical records. It is from these records that we see how easily a mother's lies became insidiously transformed into medical fact.

  Julie Gregory has a remarkable story to tell and a remarkable fortitude to share. She is also lucky to be alive. Author Philip Yancey has written, “Life is not a problem to be solved but a work to be made, and that work may well utilize much raw material we would prefer to do without.” Julie has a resilience only scarcely imaginable under the circumstances. That she has emerged not only with her sense of self intact but with enough clarity to write about it is amazing. I hope that her putting her life to paper in this searing and beautiful memoir can silence some of the demons of the past and help those still caught in the web of MBP maltreatment.

  I expect Sickened to ignite a powder keg that brings MBP forever out of the closet, giving off a light that doctors, health care organizations, professional groups, child abuse workers, and the general public can never again ignore. Born of one of the darkest and most intractable of childhood situations, the words assembled here represent a monument, a genuine triumph of the human spirit.

  Marc D. Feldman, M.D.

  Department of Psychiatry and

  Behavioral Neurobiology,

  University of Alabama, Tuscaloosa

  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 soufflé, 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 translu-cently, 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 intermitte
nt 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 at the tender age of nineteen to a man in his forties 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 wooden board, 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.