Mercies in Disguise Read online

  Begin Reading

  Table of Contents

  About the Author

  Copyright Page

  Thank you for buying this

  St. Martin’s Press ebook.

  To receive special offers, bonus content,

  and info on new releases and other great reads,

  sign up for our newsletters.

  Or visit us online at

  us.macmillan.com/newslettersignup

  For email updates on the author, click here.

  The author and publisher have provided this e-book to you for your personal use only. You may not make this e-book publicly available in any way. Copyright infringement is against the law. If you believe the copy of this e-book you are reading infringes on the author’s copyright, please notify the publisher at: us.macmillanusa.com/piracy.

  To Amanda and the Baxley family

  The two most important days in your life are the day you are born and the day you find out why.

  —MARK TWAIN

  What if trials of this life

  The rain, the storms, the hardest nights

  Are your mercies in disguise?

  —“Blessings,” BY LAURA STORY

  Introduction

  The two people Amanda Baxley loves the most begged her not to be tested—at least not now. “Please,” her mother pleaded. “Your dad is so sick. We are hurting so much already.” Her boyfriend implored her not to invite news that could cast such a long and dark shadow over their future. “You don’t know what it will do to you,” he warned.

  But she had always been so stubborn, so sure of what she wanted, so able to push past trepidation. And she was driven by the impossible expectations of what this day would bring; she had to know her future in order to control it. If she had the mutated gene—a forecast of a horrifying and fatal illness, one without treatment or cure, passed down in her family from generation to generation—she vowed it would stop with her.

  So today, with her mother and boyfriend beside her for support, Amanda sits across from her therapist—a man she first saw when she was in college, when her troubles with her boyfriend seemed overwhelming. Now, at twenty-six years old, she is facing a dilemma that seems to reach beyond her young adulthood, into the ageless realm of the surreal. Which life will it be? The one in which the years stretch outward boundlessly or the one where the future twists into a discernible, ghastly shape? Amanda glances around the room. The office is as it ever was: cozy with a fireplace across from a love seat and a couple of chairs. She has been here many times before, but now it is another world.

  A gamine with huge brown eyes and short, glossy brown hair, Amanda vibrates with energy. And though she isn’t able to bring it to bear at this particular moment, she is an optimist, always reaching instinctively for promise. She’s a hugger and a weeper, someone who does not hide her emotions. Today, she is still glowing from a recent trip to Africa, where she was able to forget herself a little while helping people who had so much less than she. At times, she was even able to forget this day, persuade herself it was not coming, this moment that will inextricably change her life.

  Amanda’s fate resides in the result of a blood test. It will reveal whether she possesses a single mutated gene, one that has contorted the fates of so many of her family members. The results are with a doctor in California, who’d ordered the test. In a few minutes the phone will ring and that doctor, on the other side of the country, will open the envelope and tell her, over speakerphone, the fateful news.

  * * *

  If your family carried a mutated gene that foretold a brutal illness and you were offered the chance to find out if you’d inherited it, would you do it? Would you walk toward the problem, bravely accepting whatever answer might come your way? Or would you turn away, hoping to protect yourself from knowing too much?

  Testing would allow you to prepare; it would permit you to plan your life accordingly, tying up loose ends and making adjustments for your truncated future. It would be practical. Perhaps it would feel the only responsible thing to do: to tell your partner or spouse that he or she will be bound to this illness, as you are. It might keep you from passing your fate on to unborn children. On the other hand, divining this illness could rob you of the limited number of carefree years left to you—years that could be spent pursuing a life you’d once taken for granted. Perhaps choosing not to know would allow you to retain a certain innocence, hopefully preserving a part of the person you were before being faced with such a dilemma. Were you to choose to live in ignorance, though, you might remain peripherally alert to the first signs of fatality: a slackening grip or a spasm in a muscle. But then, we all know the rough outline—there is the certitude of death for everyone—so why take on the weight of learning the specifics? What would you do with this information, knowing there is nothing you can do to stop the illness?

  * * *

  This is the story of an almost archetypal family in a small town in South Carolina faced with a medical mystery they were determined to solve.

  The Baxley family is a proud and determined clan, including among them respected doctors, dignified in their approach. They are a family that works hard to maintain a close-knit bond. Though they experienced the usual abrasions—teenage rebellions, angst over career choices, personality clashes—overall, life was good.

  Until, without warning, they were thrust into a harrowing medical dilemma. One by one, various members of the family were struck with an inscrutable disease, made more perplexing by the fact that it changed form slightly with each new person who got it. Often it started with a dizzy feeling or a bit of confusion. This progressed to shaky hands that could not hold a pen and moved on to lurching movements of the body. The disease ultimately rendered its victims unable to talk or to swallow without choking. And it always ended in death.

  Doctors, even specialists at leading medical centers, were perplexed. The disease mimicked some of the physical symptoms of Parkinson’s and some of the neurological symptoms of Alzheimer’s—and yet this illness exists entirely in its own sphere.

  * * *

  For a brief and intertwining period of history, the scientific world and the Baxley family found themselves on parallel missions to unlock the mystery of this illness.

  The scientific quest began with diseases like none the researchers had ever seen before. Their very nature seemed to violate the laws of biology. This class of disease was infectious but could also be inherited through mutated genes. But the principal hypothesis for why this would be true—substantiated in studies and experiments—was fiercely rejected by many prominent researchers. Gradually, however, the pieces fell into place and that once crazy-sounding hypothesis, involving distorted proteins and gene mutations that can produce them, gained credence. The revelations were so groundbreaking that two Nobel Prizes—separated by nearly thirty years—were awarded to the lead researchers. And though the Baxleys had not yet discovered it, their family was carrying one of those mutated genes.

  As these two tales converged—scientific and familial—they brought to light a fatal gene mutation and a blood test that could reveal who had it. Now the Baxleys could know who in the family had inherited this curse—and who would be spared.

  This is a story of a family that took matters into its own hands when the medical world abandoned them. It is a story of how science presented the Baxley family members with a responsibility they’d never asked for or anticipated—but that each took on in their own daring way. And it is a story of how a horrific disease taught a family forbearance and the ability to find hope even as the daunting circumstances threatened to extinguish it. This is a story of disrupting destiny.

  * * *

  In her therapist’s office, Amanda is on edge, suddenl
y wondering if perhaps she has mistaken headstrong for thoughtful; this was what she had wanted when she sent in the vial of her blood for the test, wasn’t it? She thought she’d been doing the hard work to prepare herself all along, but suddenly it feels as if there are no laws—physical, moral, or otherwise—nothing to hold her to the ground, no promise that it will be all right, no map to guide her afterward.

  The phone rings. The California doctor is on the line.

  “Are you ready, Amanda?” her therapist asks.

  Part I

  A Disease

  Prologue

  NEW GUINEA, 1957

  They called it kuru—“to be afraid” or “to shiver.” It was identified by its early symptoms—wobbling legs and a distinctive tremor that spread steadily through the limbs. Before long the victim’s whole body would begin to shake constantly and uncontrollably. Shaking would turn to flailing, and flailing to a loss of muscle control that invariably left the patient unable to stand or walk or even sit without assistance. The tongue would become flaccid, unresponsive, so words were slurred, speech was incomprehensible. Facial muscles would twitch, pulling the visage into a series of exaggerated expressions. And then, after about five months, all movement would suddenly cease: the face frozen into an unblinking mask from which two eyes stared wildly, reflecting the increasingly disoriented mind of a person descending into mute dementia. Death would follow soon after.

  No one had ever been known to recover from kuru and its symptoms. The affliction always ran the same relentless course and it was found only among the Fore, a small group of people living in the eastern highlands of New Guinea. They thought the disease was caused by sorcery: a curse they’d lived with for decades.

  The Fore population, about ten thousand individuals, slept in low grass huts in small communities clustered throughout the highlands. The men—who subsisted primarily on the animals they hunted—almost always lived apart from the women and children. In the 1950s, when our story begins, they lived presumably as they had since the dawn of their time; to a Western eye, it seemed as if they had been preserved in a time capsule, sealed off from other tribes as well as from everyone else in the outside world.

  This complete isolation wasn’t a coincidence or community choice—it was a condition imposed upon them by their neighbors, an extended quarantine enforced from outside. The surrounding peoples had pushed the Fore back behind Kuru (“trembling”) Mountain—the only time in known history that a mountain has been named for a disease—in an attempt to keep the illness in place. They too believed sorcery could spread the disease and wanted no part of it. As for the outside world, who would set out to travel through the wild rain forests in territory rumored to be inhabited by violent people, even cannibals?

  Though no one had made the connection, kuru was not as unique as it appeared. Strange diseases that resembled it had been cropping up for centuries throughout the world. These illnesses often took hold of entire families. They would show up in a parent, in siblings, in aunts and uncles and cousins, generation after generation. But these diseases were so rare, and so inexplicable, that they were mentioned only in obscure medical journals. Without a clue as to what was causing the disease, or what to do about it, the world turned away.

  1

  The Prophecy

  Tim Baxley never even got the name of the woman who told him the story that set the horror in motion. It was a June evening in 1998 and Tim was at the end of the receiving line at a viewing the night before a funeral—his father’s funeral.

  Tim’s father, Bill Baxley, had been a chemical engineer at a local packaging plant. Tall and imposing, with a stern and serious face, he had been a deacon in his church and head of the Sunday school program. He was known in his community as a problem solver, someone whom people would go to for advice or solace.

  The Baxley family had lived in or near Hartsville, South Carolina, for generations. A town that, with its suburbs, comprises twenty-one thousand people and sixteen churches—eight of which are Baptist—but not a single mosque or synagogue, it is a deeply Christian population in the heart of the Bible Belt.

  The lure of the town, its magnetic appeal for the Baxley family and many others, is its sense of community. Residents frequent family-owned stores because they like to buy from people they know. They support the town’s free medical clinic, funded by churches, foundations, businesses, and individuals and staffed by volunteer doctors and nurses who treat those who cannot afford to pay. They cherish family life—restaurants close on Sunday nights so employees can eat dinner at home with their families. High school sports make front-page news in the town’s paper. The church basketball teams take time-outs during the games for devotions. It is a place of conservative tradition, of exacting conformity, stifling to some but a comfort to those who have come to feel that Hartsville is their true home.

  Bill Baxley proudly fit in. So staunch a patriarch and so perfect a picture of traditional southern living was he that, in 1985, he was awarded a plaque from Governor Richard Riley naming his clan South Carolina Family of the Year “in recognition of the exemplary qualities of family life exhibited by the William H. Baxley, Jr. family.”

  It was a confirmation of Bill’s belief, shared by his family, that the Baxley clan was special, maybe even indestructible—certainly a testament to the grace conferred by faith, discipline, and hard work. Even Bill’s viewing at the funeral home seemed to confirm this belief.

  Tim knew the respect his father commanded, yet he was still astonished by the size of the crowd that night. The viewing was supposed to start at 6:00 p.m. and end at 8:00, but people lined up outside the door at 5:45. The last did not leave until 10:00. Hundreds arrived—more than the funeral director had ever seen—a steady stream of people coming despite the thick heat of that June evening. The line snaked around the wall on the right side of the front room of the funeral home, then extended out the door and through the parking lot and down the sidewalk. The family formed its own small line in that front room, greeting people as they came by. Bill Baxley lay in an open casket in a small room just behind them. Many could not bear to see him—they left after paying their respects to the family. Others, as is the Baptist tradition, filed past the casket, with no kneeling, no signs of the cross, just a solemn acknowledgment of the revered man.

  The Baxley men were readily identified by strong, dark brows shading large, dark eyes, a head of thick chestnut hair, a narrow oval face and a straight, angular nose. They all had a sensuously full upper lip with a pronounced Cupid’s bow. From generation to generation, the Baxley boys looked so similar that it was difficult at times to tell them apart.

  But this man in the casket—this man looked nothing like Bill Baxley. He was a stranger. A rippled sateen pillow tipped a shriveled face up to the line of passing mourners. Bill’s gray hair had been pulled back, the skin drawn tight against his forehead. Heavy makeup was smeared over the scar where his brain had been removed in a vain attempt to figure out the illness that had robbed him of his life. His favorite charcoal gray suit hung loose on his shrunken body; his red tie with a South Carolina emblem did nothing to draw the eye from the desolation of his body.

  Tim was at the front of the receiving line, standing ahead of his older brothers, Billy, Mike, and Buddy. He glanced back at his mother—tiny, frail-looking Merle—who stood near the entrance to the room where her husband’s casket lay. It would be a long night for her; she’d borne a heavy burden. And yet, after years of watching her commanding husband degrade into an invalid, aging twice as quickly as he should have, after years of helplessly watching as aides transferred his weight from wheelchair to toilet and back again, after spoon-feeding him his meals, after waiting while he communicated by grunting or nodding or slowly pointing to letters on an alphabet board, she felt in spite of herself a kernel of relief that his suffering was now over.

  Between greeting visitors, Tim observed his mother shake well-wishers’ hands and acknowledge their sympathy. She was bearing up better
than he had dared to hope. He developed a kind of rhythm. He’d accept a “sorry for your loss” with a grateful smile and then turn his head to see his mother doing the same thing.

  Soon, the motions became automatic. So he paid little notice to the plump gray-haired woman from the nearby town of Darlington when she made her way up to him, one of so many in that sea of mourners.

  “I am so sorry for your loss.”

  Now her eyes turned down, her smile faded slightly. She looked up at him again, holding his glance meaningfully.

  “I remember his daddy walking through the plant. He had to hang on to the machines.”

  This seemingly innocuous comment was delivered so quietly that she had already moved on by the time Tim recognized its meaning.

  * * *

  Throughout his father’s illness—abrupt in its onset and unswerving in its course—Tim Baxley had sought answers from one doctor after another—general practitioners, pathologists, neurologists. And he’d never received one that satisfied him. His father, doctors said, suffered from a rare, anomalous disease, kind of a blend of Alzheimer’s and Parkinson’s, but his was a case like none any of them had ever seen or heard of before. And yet, suddenly, in the briefest of exchanges, this woman had conveyed that she had seen it before in his grandfather—a crucial detail Tim had never known. That loss of balance, it was one of the first signs, wasn’t it?

  Standing there in the funeral home, Tim was barraged by memories and images, one after the other. His dad shuffling as he walked; soon the shuffling turned into stumbling and then a sort of weaving, like he was drunk. The way his father careened through the living room, clutching at the wall for support, hanging on to chairs and sofas. And that was in the beginning, when things just seemed off, but nothing so strange that it could suggest a fatal problem.