The Vanishing Family

Love, Fate, and the Quest to End Dementia

Author Robert Kolker On Tour
Read by Sean Pratt
From the #1 New York Times bestselling author of Hidden Valley Road comes the heart-wrenching journey of a family facing an unthinkable destiny, whose flawed genetic code might hold the long-sought key to a cure for dementia.

In the idyllic American town of Pleasant Hills, Pennsylvania, there lived a family with nine siblings, the youngest a girl named Barb. As the older children headed off to college and started their lives, only Barb was home to see their beautiful, still-young mother fall under a gothic spell, changing into someone she didn’t recognize: withdrawn, neglectful, uncaring. Thus begins The Vanishing Family, journalist Robert Kolker’s superb follow-up to Hidden Valley Road (“Deeply compassionate and chilling,” wrote The Washington Post). This family, we learn, has a genetic mutation that causes dementia, but with an especially cruel twist. As early as their forties, formerly loving parents and hard-driving executives will lose their jobs, have affairs, take up drinking—shed all inhibitions and sense of responsibility—and become people their families hardly know. Their former personalities seem to vanish—and there is a fifty-fifty chance that it will happen to their children, too.

The Vanishing Family unfolds like a heartbreaking thriller as the siblings begin to realize that what happened to their mother is happening to them: first one, then two, three, four, and more begin to change. Sue, in search of a calling, finds her place in caring for the others. Barb sets out to find a cure. Alongside their story, Kolker weaves in the dramatic scientific fight against dementia; after decades of blind alleys, this this family’s rare form of FTD (frontotemporal dementia) might lead to a breakthrough in the prevention and treatment of all dementia—including the scourge of Alzheimer’s disease. Moving, intimate, unexpectedly hopeful and redemptive, The Vanishing Family is an enthralling narrative about one family’s fate, and a medical detective story that speaks to all of us who fear losing ourselves at the end.
Chapter 1

Dear Santa,

Here we are in the great western end of bunificent Pennsylvania in the Pleasant land of Hills, bordering Iron City, facing the evanescent Monongahela and retreating rear-­wards towards the frothing Youghiogheny. We bow our familial heads at this time in Thanksgiving, for God knows what!

—­Ollie’s family letter to Santa, Christmas 1968

They had arrived a year earlier, in 1967, in Pleasant Hills, a swath of farmland swiftly turning into suburb on the southern outskirts of Pittsburgh. The town’s name was at least half right: There were hills, for sure, but so tightly packed together that even a short drive was an adventure in gassing, braking, and swerving. It was as if God treated the earth like a rug and pushed one end in as far as he could, bunching it up, creating more ups and downs than any place has a right to.

Ollie and Jean’s five-­bedroom Colonial sat in the middle of one particularly steep hill, their front walk pitched at a sharp diagonal. The kids stumbled down the hill for the school bus in the morning and clomped back up at day’s end. Behind the house was a hillside spanning the backyards of four different homes, perfect for sledding and inner tubing all winter and sardines and capture the flag all summer. The neighborhood kids, a few dozen sometimes, would gather there all day and stay out after dark. Compared with the other houses on the street, theirs was enormous, and the games would continue inside.

The parents let the basement become a children’s domain, like the attic in Little Women—­a warren of rooms, one with a pool table and another stocked with dress-­up clothes. Ollie and Jean let them build forts or play hide-­and-­seek in any room of the house, even the master bedroom and Ollie’s drafting room. Their walk-­in closet had a shelf kids could climb up on, with a little cubby just large enough to hide in. One hallway was so narrow that kids could shimmy up the sides like a spider and cling to the ceiling in the shadows.

Jean stood ready to offer suggestions to a slew of bored children. She had them make their own games, cutting up photos from news­papers and magazines to play The Price Is Right. They’d spend five hours making the game and thirty minutes playing it. “There’s no such thing as boredom,” she’d say. “You just have to think of stuff to do.”

Back then, Jean was copiously put together, never leaving the house without stockings, high heels, and a dress. At home, her hair was always in curlers, and she never missed a twice-­weekly trip to the salon. She made two dinners every night, an early one for the kids and a later one for just her and Ollie. Each night when her husband got home, she had cocktails waiting for them both—­old-­fashioneds for him, Manhattans for her. Their life seemed exemplary, even idyllic. What went unsaid was how for both Ollie and Jean, moving to Pleasant Hills had signaled a note of optimism for a family that, after being thrown a few curves, was hoping for a change of luck.

They had met almost twenty years earlier, in 1949, on a train between St. Louis, Missouri, where they both grew up, and South Bend, Indiana, where they both went to college. Ollie was twenty-­three, attending Notre Dame a little late because of the war; Jean was three years younger, but in the same year at Notre Dame’s sister school, St. Mary’s. Jean fell right away for Ollie’s imposing looks, his shock of dark hair, and his booming voice loaded with ambition and nerve. At six feet, three inches, he loomed awkwardly over Jean, who was nearly a foot shorter—­soft-­spoken and dainty, like a little doll. On the dance floor, she fit easily under his arm as she twirled.

They were, in a sense, from the same sort of people. While Jean’s father was a manager for Sears, Roebuck & Co., Ollie’s was a wholesale fabric distributor who had started at the bottom and then bought out the company he worked for, running it for decades. Both families were Irish-­Catholic, though Ollie’s had some German and Jean’s some Czech. But every family has its dramas, and soon after they met, Jean learned that Ollie and his parents often clashed. Their problems seemed to start during World War II, when Ollie’s father had him graduate from high school a year early and enroll at Notre Dame to avoid the draft. As soon as he was in college, Ollie defied his parents and joined up with the Navy ROTC. And in 1943, with the war still raging, he enlisted in the Navy.

The war ended just as he was about to be deployed. He’d been stationed in Pensacola, Florida, where he trained to fly a fighter plane called the F4U Corsair, but never took part in a single mission. Back at Notre Dame, still stinging from not being able to fight, Ollie had started on his plan B, civil engineering. Yet again, he was defying his parents. The family fabric business was his to take, but he did not want his father’s life. He wanted to build things and start something of his own, and Jean wholeheartedly bought into that dream. To celebrate the couple’s engagement in 1949, Jean’s parents threw a Christmas Day open house and decorated the mirror above the living room fireplace with a portrait of a giant Santa Claus holding engineering plans. The artwork’s caption: “Ollie and Jean’s blueprint for happiness.”

They married on a June day in 1950. Soon after, they found a home, a barnlike four-­bedroom Colonial surrounded by oak trees in the St. Louis suburb of Webster Groves. The 1950s, for Jean, were all about the kids: Kathy, Christy, Sue, Dutch, and Mary were born that decade, until the house no longer seemed so large. In addition to those first five children, there were two miscarriages. As an observant Catholic, Jean believed even more fervently than her own mother had that birth control was a sin. While Jean tended to the children, Ollie found a series of engineering jobs, dreaming of the day when he would start a business of his own. He was an outdoorsy, barbecuing dad, reported by neighbors one Fourth of July for an overly ambitious fireworks display that drew half the neighborhood. Having played soccer in college, Ollie coached the kids’ soccer and softball teams, and at any given moment his focus tended to land on whichever child was playing a sport.

These were what some of the children old enough to remember still look back on as the Camelot years. There were other large families in Webster Groves, and enough children for the kids to spend all daylight hours together until the streetlights came on. Being close to St. Louis meant they were a short distance from aunts, uncles, and cousins, and went to see them all the time. Ollie’s parents belonged to a club where the kids could swim and learn to play golf. And Jean, back then, was something of a wonder, filled with optimism and energy, reading, gardening, and playing bridge with Ollie and their friends. She shopped for the food on a strict budget, making the calculations and lists in her head, and cooked everything for the family. She made her own donuts and pizza from scratch, and served up enchiladas when they were still considered an exotic foreign dish.

The older children remember her so differently from the woman she became. It was only in hindsight that they saw what was happening—­how Jean withdrew, fading into the background of her children’s lives. And even then there was no consensus on why.

If it was possible to be devoted to one’s family but also feel apart from it, Sue managed it. She was the family’s third child, born in 1955—­twenty-­one years, an entire generation, before Barb, the youngest. From a young age, there was a standard for her to live up to that she was never meeting, a bar set by her two older sisters, Kathy and Christy, for whom everything seemed to come easily. Kathy, the eldest, was crafty and quick-­witted, the leader of the pack, setting the agenda for everyone else even if they didn’t want her to; Christy was composed and self-­assured, less interested in wielding power over the others and yet somehow garnering more respect because of it. They were born just thirteen months apart, and in those early years they operated as a closed unit. “I was never as smart,” said Sue, who was three years younger than Christy. “I was always following in their footsteps. They were honor roll, and they were really the best that you could be.”

For a few years, Sue found an ally in Dutch, the fourth child, who had a place of honor in the family merely by being the first boy. (To mark the occasion of his birth, Ollie bought Jean a mink coat.) Like Sue, Dutch was towheaded as a child; they were partners in crime until puberty, when he drifted away to spend time with other boys in the neighborhood. Next came Mary, four years younger than Sue, who seemed to slip into Kathy and Christy’s inner circle almost without trying. Mary played piano at three, and she was so good at math that their father later bought her an expensive calculator for high-­level classes. The others, like Sue, were on their own.

Sometimes Sue felt as if she’d been out sick the day the family was handing out special distinctions. It took some time to discover there was an explanation. In the first grade, Sue started to fail the spelling tests that she and the other students took verbally, shouting out the spellings of words called out by the teacher. She was embarrassed, even ashamed, until her teacher, who also had taught Kathy and Christy, met with their mother and said, “Susie knows the answers.” She had quizzed Sue later and saw that her only problem was failing to hear the questions.

A case of childhood measles had left Sue with scarred eardrums. A hearing test showed that she had 75 percent hearing in one ear and 50 percent in another. Her acoustic nerve was damaged, too, and so a doctor suggested taking out Sue’s tonsils and adenoids, as a precaution against things getting worse. Jean scheduled the surgery over Christmas so that Sue wouldn’t miss school—­she would receive no special treatment in this house—­but the surgery didn’t help, and hearing aids were an unattainable luxury for the family. It seemed to Sue that from that point forward there were obvious limits on what she could accomplish. Piano was a nonstarter, and learning in a classroom was never going to be easy.

But Jean wasn’t going to give Sue a pass. Maybe she didn’t want her daughter to get into the habit of holding herself back, or maybe she truly considered Sue a disappointment. Sue could never really tell. All she knew was that rather than encourage Sue, Jean criticized her, noting time and again the ways in which she straggled behind. At its worst, Sue felt like a second-­class citizen in her own family. She remembers being left at home, like Cinderella, to look after the little ones while Jean and Ollie went to Kathy’s or Christy’s dance recitals or softball games. For a time, she rebelled, breaking more rules than her two older sisters put together. Once, she crept into the family car with a friend to listen to the radio—­a major violation—­and got caught when she put the car into neutral and rolled out onto the street. Another time, Sue put salt in the sugar bowl and then watched as the grown-­ups, over morning coffee, failed to appreciate the prank. She kept on doing it for a week. Once, she decided simply not to babysit the little ones, and little Dutch and Mary wandered off on their own to their friends’ houses until their parents came home, enraged. “I put my mom through hell,” Sue said, remembering one time when Jean chased her out of the house with a willow switch—­Sue can’t recall what she had done—­crying, “You have to come home sometime!”

Things changed for Sue when the sixth and seventh children, Peggy and Scott, arrived in the early 1960s. Caring for seven children was an all-­consuming effort for Jean. It was then that Sue, seeing an opportunity to distinguish herself, became less of a hellion and more of a mother’s helper, changing the little ones’ diapers and folding laundry. Her mother never stopped comparing Sue with her sisters. But Sue discovered that in some of the most uncomfortable situations she was good at finding ways to be of value.



In 1966, the family pulled up stakes and left Webster Groves for Canton, Ohio. Sue, who was ten, thought they were moving for more space. She was too young to know the real reason.

Ollie’s professional ambitions hadn’t gone as planned. After several years working for others, he got help from his father to set up his own business, a civil engineering consultancy. Here, finally, was his chance to help build bridges and transit systems in cities around the world. But not long into the venture, the company failed. There was a problem on a job site, followed by a lawsuit and a settlement that had to be paid off with the company’s liability insurance policy. When it was over, the policy’s guarantor, Ollie’s father, refused to put up money for a new bond. He stopped backing his son for a reason having nothing to do with the litigation. It was because Ollie had started a romance with his secretary and was making noises about leaving his family.

Kathy, then thirteen, met the other woman at least once. “She was very nice, and kind of flirty, and kind of pretty, and she was divorced,” she remembered, with a daughter about the same age as Ollie’s older kids. Kathy only learned they were involved years later; none of the children knew at the time how close their parents’ marriage came to collapsing. The affair’s timing was especially brutal for Jean, who was expecting their eighth child. She was completely vulnerable and utterly dependent on her husband—­as were, of course, the children. She also happened to still love him.

In the face of losing the life she treasured, all Jean could do was refuse to let him go. “We’re Catholics,” she said. “We don’t get divorced.” She’d repeat this same sentiment to her children in the years to come. Jean might have felt that she was at Ollie’s mercy, but there was only one way this was going to end. By refusing to back Ollie’s company, his father had all but ensured the business would go under—­and made it practically impossible for Ollie to turn his back on his family.

Ollie had no choice. He stayed with Jean and went looking for a new job. Was this the first time he strayed? None of the children know for sure. But it would not be the last. In the decades to come, at least as far as the children could tell, Jean would remain completely besotted with her husband, ready to take him back every time he wandered away.

Their move to Ohio lasted only a year and a half. Jenny, baby number eight, was born there, shortly after they arrived. But Ollie's professional problems continued. Not being his own boss meant having to hold his tongue when someone above him made a decision he disagreed with. "My dad was not one to be political," Kathy said. "He was one to tell the boss exactly what he thought, and let the chips fall where they may."

There weren't many other options in Ohio, where industry was collapsing and engineering businesses were falling by the wayside. But a few hours east was Pittsburgh, which at the time was still a smoky, smoldering juggernaut. And so, in 1967, the family arrived in Pleasant Hills, Pennsylvania, for yet another shot at the dream.
© © Jeff Zorabedian
ROBERT KOLKER is a contributing writer at The New York Times Magazine and author of the #1 New York Times bestseller Hidden Valley Road, named an Oprah’s Book Club Pick, a New York Times Book Review Top 10 book of the year, a GQ Best Book of Literary Journalism of the 21st Century, and a Kirkus Reviews Best Nonfiction Book of the Century. His first book was Lost Girls, named a New York Times Notable Book and a Publishers Weekly Best Book of 2013. View titles by Robert Kolker
“This is a triumph of reporting and an absolutely compelling exploration of neuroscience and genetics. At its heart, though, it's a poignant, heartfelt story about family and how love sustains even in the most difficult circumstances. Like Kolker's other work, it is full of deep humanity. It's a beautiful book.”
—Susan Orlean, New York Times-bestselling author of The Orchid Thief and Joyride

“Robert Kolker has somehow done it again. The Vanishing Family is an extraordinary investigation of the forms of silence and denial that come to structure a family redefined by dementia. It is also a riveting family saga about sisters and brothers trying to understand who they are as they gradually lose their memories and attachments.”
—Rachel Aviv, Pulitzer Prize finalist and New York Times-bestselling author of Strangers to Ourselves

“Kolker hits it out of the ballpark again. He writes about brain disorders the way great war correspondents write about battle: through the intimate lives caught in the crossfire. This book is gripping, devastating, illuminating, and impossible to put down.”
—David Eagleman, neuroscientist at Stanford University and New York Times-bestselling author of Livewired and Incognito

“An extraordinary and deeply human story about the long and twisting road to a scientific cure for dementia. Drawing on one family's harrowing genetic legacy, Bob Kolker illuminates not only the promise of gene-targeted therapies but also the brutal calculus of learning your biological fate. The Vanishing Family reads like a gripping medical mystery and an intimate family diary, forcing all of us to confront what it means to lose, and perhaps preserve, the self. This book is unforgettable.”
—Sanjay Gupta MD, associate professor of neurosurgery at Emory University, CNN chief medical correspondent, and author of the #1 New York Times bestseller Keep Sharp

“It is a marvelous paradox that Robert Kolker possesses in abundance exactly the qualities that frontotemporal dementia erases: warmth, engagement, generosity, empathy. Because he cares so deeply about every member of this ill-starred family, we care too. This is a memorably humane book whose power grows as, page by page, we cheer for each winner of the genetic coin toss and grieve for each loser.”
—Anne Fadiman, award-winning author of The Spirit Catches You and You Fall Down

The Vanishing Family is a deeply intimate portrait of a family confronting a shared genetic fate, and the love, courage, and choices that follow. Robert Kolker brings clarity and compassion to frontotemporal dementia, offering both insight and urgency through his storytelling. His deep commitment to the FTD community makes this an important contribution, and this family’s willingness to share their story is both powerful and generous.”
—Emma Heming Willis, New York Times-bestselling author of The Unexpected Journey and advocate for FTD and caregivers

“Robert Kolker has written a deeply moving portrait of a family trying to outrun a mind-ravaging disorder, the researchers who can identify the genetic mutation that causes it — but can do nothing to prevent or slow its progress — and the courage of those who persist despite research roadblocks and the terror and sorrow of knowing they have inherited what cannot be averted. What gives The Vanishing Family its haunting power is the deep humanity the author brings to a story that, like the specter of dementia itself, has urgent implications for us all.”
—Jonathan Rosen, author of The Best Minds, finalist for the Pulitzer Prize

“Those who have already read Robert Kolker’s work know what to expect from The Vanishing Family — a timely, urgent story in which one family’s personal history provides a window on larger medical/ethical issues. Those who have not are in for a treat. Deeply empathetic, this book reads like a thriller, but Kolker doesn’t pretend there are any real answers for families affected by this particular form of dementia. Moving, haunting, and profound.”
—Laura Lippman, New York Times-bestselling author of Lady in the Lake and What the Dead Know

“A moving account of one Pennsylvania family’s struggle with a rare inherited form of frontotemporal dementia. . . . Kolker skillfully translates complex neuroscience into accessible prose and balances scientific discovery with intimate family drama. . . . It’s a powerful examination of inheritance, resilience, and the human cost of medical uncertainty.”
Publishers Weekly

“A compelling view of dementia and its devastating effect on victims and family alike.”
Kirkus Reviews

About

From the #1 New York Times bestselling author of Hidden Valley Road comes the heart-wrenching journey of a family facing an unthinkable destiny, whose flawed genetic code might hold the long-sought key to a cure for dementia.

In the idyllic American town of Pleasant Hills, Pennsylvania, there lived a family with nine siblings, the youngest a girl named Barb. As the older children headed off to college and started their lives, only Barb was home to see their beautiful, still-young mother fall under a gothic spell, changing into someone she didn’t recognize: withdrawn, neglectful, uncaring. Thus begins The Vanishing Family, journalist Robert Kolker’s superb follow-up to Hidden Valley Road (“Deeply compassionate and chilling,” wrote The Washington Post). This family, we learn, has a genetic mutation that causes dementia, but with an especially cruel twist. As early as their forties, formerly loving parents and hard-driving executives will lose their jobs, have affairs, take up drinking—shed all inhibitions and sense of responsibility—and become people their families hardly know. Their former personalities seem to vanish—and there is a fifty-fifty chance that it will happen to their children, too.

The Vanishing Family unfolds like a heartbreaking thriller as the siblings begin to realize that what happened to their mother is happening to them: first one, then two, three, four, and more begin to change. Sue, in search of a calling, finds her place in caring for the others. Barb sets out to find a cure. Alongside their story, Kolker weaves in the dramatic scientific fight against dementia; after decades of blind alleys, this this family’s rare form of FTD (frontotemporal dementia) might lead to a breakthrough in the prevention and treatment of all dementia—including the scourge of Alzheimer’s disease. Moving, intimate, unexpectedly hopeful and redemptive, The Vanishing Family is an enthralling narrative about one family’s fate, and a medical detective story that speaks to all of us who fear losing ourselves at the end.

Excerpt

Chapter 1

Dear Santa,

Here we are in the great western end of bunificent Pennsylvania in the Pleasant land of Hills, bordering Iron City, facing the evanescent Monongahela and retreating rear-­wards towards the frothing Youghiogheny. We bow our familial heads at this time in Thanksgiving, for God knows what!

—­Ollie’s family letter to Santa, Christmas 1968

They had arrived a year earlier, in 1967, in Pleasant Hills, a swath of farmland swiftly turning into suburb on the southern outskirts of Pittsburgh. The town’s name was at least half right: There were hills, for sure, but so tightly packed together that even a short drive was an adventure in gassing, braking, and swerving. It was as if God treated the earth like a rug and pushed one end in as far as he could, bunching it up, creating more ups and downs than any place has a right to.

Ollie and Jean’s five-­bedroom Colonial sat in the middle of one particularly steep hill, their front walk pitched at a sharp diagonal. The kids stumbled down the hill for the school bus in the morning and clomped back up at day’s end. Behind the house was a hillside spanning the backyards of four different homes, perfect for sledding and inner tubing all winter and sardines and capture the flag all summer. The neighborhood kids, a few dozen sometimes, would gather there all day and stay out after dark. Compared with the other houses on the street, theirs was enormous, and the games would continue inside.

The parents let the basement become a children’s domain, like the attic in Little Women—­a warren of rooms, one with a pool table and another stocked with dress-­up clothes. Ollie and Jean let them build forts or play hide-­and-­seek in any room of the house, even the master bedroom and Ollie’s drafting room. Their walk-­in closet had a shelf kids could climb up on, with a little cubby just large enough to hide in. One hallway was so narrow that kids could shimmy up the sides like a spider and cling to the ceiling in the shadows.

Jean stood ready to offer suggestions to a slew of bored children. She had them make their own games, cutting up photos from news­papers and magazines to play The Price Is Right. They’d spend five hours making the game and thirty minutes playing it. “There’s no such thing as boredom,” she’d say. “You just have to think of stuff to do.”

Back then, Jean was copiously put together, never leaving the house without stockings, high heels, and a dress. At home, her hair was always in curlers, and she never missed a twice-­weekly trip to the salon. She made two dinners every night, an early one for the kids and a later one for just her and Ollie. Each night when her husband got home, she had cocktails waiting for them both—­old-­fashioneds for him, Manhattans for her. Their life seemed exemplary, even idyllic. What went unsaid was how for both Ollie and Jean, moving to Pleasant Hills had signaled a note of optimism for a family that, after being thrown a few curves, was hoping for a change of luck.

They had met almost twenty years earlier, in 1949, on a train between St. Louis, Missouri, where they both grew up, and South Bend, Indiana, where they both went to college. Ollie was twenty-­three, attending Notre Dame a little late because of the war; Jean was three years younger, but in the same year at Notre Dame’s sister school, St. Mary’s. Jean fell right away for Ollie’s imposing looks, his shock of dark hair, and his booming voice loaded with ambition and nerve. At six feet, three inches, he loomed awkwardly over Jean, who was nearly a foot shorter—­soft-­spoken and dainty, like a little doll. On the dance floor, she fit easily under his arm as she twirled.

They were, in a sense, from the same sort of people. While Jean’s father was a manager for Sears, Roebuck & Co., Ollie’s was a wholesale fabric distributor who had started at the bottom and then bought out the company he worked for, running it for decades. Both families were Irish-­Catholic, though Ollie’s had some German and Jean’s some Czech. But every family has its dramas, and soon after they met, Jean learned that Ollie and his parents often clashed. Their problems seemed to start during World War II, when Ollie’s father had him graduate from high school a year early and enroll at Notre Dame to avoid the draft. As soon as he was in college, Ollie defied his parents and joined up with the Navy ROTC. And in 1943, with the war still raging, he enlisted in the Navy.

The war ended just as he was about to be deployed. He’d been stationed in Pensacola, Florida, where he trained to fly a fighter plane called the F4U Corsair, but never took part in a single mission. Back at Notre Dame, still stinging from not being able to fight, Ollie had started on his plan B, civil engineering. Yet again, he was defying his parents. The family fabric business was his to take, but he did not want his father’s life. He wanted to build things and start something of his own, and Jean wholeheartedly bought into that dream. To celebrate the couple’s engagement in 1949, Jean’s parents threw a Christmas Day open house and decorated the mirror above the living room fireplace with a portrait of a giant Santa Claus holding engineering plans. The artwork’s caption: “Ollie and Jean’s blueprint for happiness.”

They married on a June day in 1950. Soon after, they found a home, a barnlike four-­bedroom Colonial surrounded by oak trees in the St. Louis suburb of Webster Groves. The 1950s, for Jean, were all about the kids: Kathy, Christy, Sue, Dutch, and Mary were born that decade, until the house no longer seemed so large. In addition to those first five children, there were two miscarriages. As an observant Catholic, Jean believed even more fervently than her own mother had that birth control was a sin. While Jean tended to the children, Ollie found a series of engineering jobs, dreaming of the day when he would start a business of his own. He was an outdoorsy, barbecuing dad, reported by neighbors one Fourth of July for an overly ambitious fireworks display that drew half the neighborhood. Having played soccer in college, Ollie coached the kids’ soccer and softball teams, and at any given moment his focus tended to land on whichever child was playing a sport.

These were what some of the children old enough to remember still look back on as the Camelot years. There were other large families in Webster Groves, and enough children for the kids to spend all daylight hours together until the streetlights came on. Being close to St. Louis meant they were a short distance from aunts, uncles, and cousins, and went to see them all the time. Ollie’s parents belonged to a club where the kids could swim and learn to play golf. And Jean, back then, was something of a wonder, filled with optimism and energy, reading, gardening, and playing bridge with Ollie and their friends. She shopped for the food on a strict budget, making the calculations and lists in her head, and cooked everything for the family. She made her own donuts and pizza from scratch, and served up enchiladas when they were still considered an exotic foreign dish.

The older children remember her so differently from the woman she became. It was only in hindsight that they saw what was happening—­how Jean withdrew, fading into the background of her children’s lives. And even then there was no consensus on why.

If it was possible to be devoted to one’s family but also feel apart from it, Sue managed it. She was the family’s third child, born in 1955—­twenty-­one years, an entire generation, before Barb, the youngest. From a young age, there was a standard for her to live up to that she was never meeting, a bar set by her two older sisters, Kathy and Christy, for whom everything seemed to come easily. Kathy, the eldest, was crafty and quick-­witted, the leader of the pack, setting the agenda for everyone else even if they didn’t want her to; Christy was composed and self-­assured, less interested in wielding power over the others and yet somehow garnering more respect because of it. They were born just thirteen months apart, and in those early years they operated as a closed unit. “I was never as smart,” said Sue, who was three years younger than Christy. “I was always following in their footsteps. They were honor roll, and they were really the best that you could be.”

For a few years, Sue found an ally in Dutch, the fourth child, who had a place of honor in the family merely by being the first boy. (To mark the occasion of his birth, Ollie bought Jean a mink coat.) Like Sue, Dutch was towheaded as a child; they were partners in crime until puberty, when he drifted away to spend time with other boys in the neighborhood. Next came Mary, four years younger than Sue, who seemed to slip into Kathy and Christy’s inner circle almost without trying. Mary played piano at three, and she was so good at math that their father later bought her an expensive calculator for high-­level classes. The others, like Sue, were on their own.

Sometimes Sue felt as if she’d been out sick the day the family was handing out special distinctions. It took some time to discover there was an explanation. In the first grade, Sue started to fail the spelling tests that she and the other students took verbally, shouting out the spellings of words called out by the teacher. She was embarrassed, even ashamed, until her teacher, who also had taught Kathy and Christy, met with their mother and said, “Susie knows the answers.” She had quizzed Sue later and saw that her only problem was failing to hear the questions.

A case of childhood measles had left Sue with scarred eardrums. A hearing test showed that she had 75 percent hearing in one ear and 50 percent in another. Her acoustic nerve was damaged, too, and so a doctor suggested taking out Sue’s tonsils and adenoids, as a precaution against things getting worse. Jean scheduled the surgery over Christmas so that Sue wouldn’t miss school—­she would receive no special treatment in this house—­but the surgery didn’t help, and hearing aids were an unattainable luxury for the family. It seemed to Sue that from that point forward there were obvious limits on what she could accomplish. Piano was a nonstarter, and learning in a classroom was never going to be easy.

But Jean wasn’t going to give Sue a pass. Maybe she didn’t want her daughter to get into the habit of holding herself back, or maybe she truly considered Sue a disappointment. Sue could never really tell. All she knew was that rather than encourage Sue, Jean criticized her, noting time and again the ways in which she straggled behind. At its worst, Sue felt like a second-­class citizen in her own family. She remembers being left at home, like Cinderella, to look after the little ones while Jean and Ollie went to Kathy’s or Christy’s dance recitals or softball games. For a time, she rebelled, breaking more rules than her two older sisters put together. Once, she crept into the family car with a friend to listen to the radio—­a major violation—­and got caught when she put the car into neutral and rolled out onto the street. Another time, Sue put salt in the sugar bowl and then watched as the grown-­ups, over morning coffee, failed to appreciate the prank. She kept on doing it for a week. Once, she decided simply not to babysit the little ones, and little Dutch and Mary wandered off on their own to their friends’ houses until their parents came home, enraged. “I put my mom through hell,” Sue said, remembering one time when Jean chased her out of the house with a willow switch—­Sue can’t recall what she had done—­crying, “You have to come home sometime!”

Things changed for Sue when the sixth and seventh children, Peggy and Scott, arrived in the early 1960s. Caring for seven children was an all-­consuming effort for Jean. It was then that Sue, seeing an opportunity to distinguish herself, became less of a hellion and more of a mother’s helper, changing the little ones’ diapers and folding laundry. Her mother never stopped comparing Sue with her sisters. But Sue discovered that in some of the most uncomfortable situations she was good at finding ways to be of value.



In 1966, the family pulled up stakes and left Webster Groves for Canton, Ohio. Sue, who was ten, thought they were moving for more space. She was too young to know the real reason.

Ollie’s professional ambitions hadn’t gone as planned. After several years working for others, he got help from his father to set up his own business, a civil engineering consultancy. Here, finally, was his chance to help build bridges and transit systems in cities around the world. But not long into the venture, the company failed. There was a problem on a job site, followed by a lawsuit and a settlement that had to be paid off with the company’s liability insurance policy. When it was over, the policy’s guarantor, Ollie’s father, refused to put up money for a new bond. He stopped backing his son for a reason having nothing to do with the litigation. It was because Ollie had started a romance with his secretary and was making noises about leaving his family.

Kathy, then thirteen, met the other woman at least once. “She was very nice, and kind of flirty, and kind of pretty, and she was divorced,” she remembered, with a daughter about the same age as Ollie’s older kids. Kathy only learned they were involved years later; none of the children knew at the time how close their parents’ marriage came to collapsing. The affair’s timing was especially brutal for Jean, who was expecting their eighth child. She was completely vulnerable and utterly dependent on her husband—­as were, of course, the children. She also happened to still love him.

In the face of losing the life she treasured, all Jean could do was refuse to let him go. “We’re Catholics,” she said. “We don’t get divorced.” She’d repeat this same sentiment to her children in the years to come. Jean might have felt that she was at Ollie’s mercy, but there was only one way this was going to end. By refusing to back Ollie’s company, his father had all but ensured the business would go under—­and made it practically impossible for Ollie to turn his back on his family.

Ollie had no choice. He stayed with Jean and went looking for a new job. Was this the first time he strayed? None of the children know for sure. But it would not be the last. In the decades to come, at least as far as the children could tell, Jean would remain completely besotted with her husband, ready to take him back every time he wandered away.

Their move to Ohio lasted only a year and a half. Jenny, baby number eight, was born there, shortly after they arrived. But Ollie's professional problems continued. Not being his own boss meant having to hold his tongue when someone above him made a decision he disagreed with. "My dad was not one to be political," Kathy said. "He was one to tell the boss exactly what he thought, and let the chips fall where they may."

There weren't many other options in Ohio, where industry was collapsing and engineering businesses were falling by the wayside. But a few hours east was Pittsburgh, which at the time was still a smoky, smoldering juggernaut. And so, in 1967, the family arrived in Pleasant Hills, Pennsylvania, for yet another shot at the dream.

Author

© © Jeff Zorabedian
ROBERT KOLKER is a contributing writer at The New York Times Magazine and author of the #1 New York Times bestseller Hidden Valley Road, named an Oprah’s Book Club Pick, a New York Times Book Review Top 10 book of the year, a GQ Best Book of Literary Journalism of the 21st Century, and a Kirkus Reviews Best Nonfiction Book of the Century. His first book was Lost Girls, named a New York Times Notable Book and a Publishers Weekly Best Book of 2013. View titles by Robert Kolker

Praise

“This is a triumph of reporting and an absolutely compelling exploration of neuroscience and genetics. At its heart, though, it's a poignant, heartfelt story about family and how love sustains even in the most difficult circumstances. Like Kolker's other work, it is full of deep humanity. It's a beautiful book.”
—Susan Orlean, New York Times-bestselling author of The Orchid Thief and Joyride

“Robert Kolker has somehow done it again. The Vanishing Family is an extraordinary investigation of the forms of silence and denial that come to structure a family redefined by dementia. It is also a riveting family saga about sisters and brothers trying to understand who they are as they gradually lose their memories and attachments.”
—Rachel Aviv, Pulitzer Prize finalist and New York Times-bestselling author of Strangers to Ourselves

“Kolker hits it out of the ballpark again. He writes about brain disorders the way great war correspondents write about battle: through the intimate lives caught in the crossfire. This book is gripping, devastating, illuminating, and impossible to put down.”
—David Eagleman, neuroscientist at Stanford University and New York Times-bestselling author of Livewired and Incognito

“An extraordinary and deeply human story about the long and twisting road to a scientific cure for dementia. Drawing on one family's harrowing genetic legacy, Bob Kolker illuminates not only the promise of gene-targeted therapies but also the brutal calculus of learning your biological fate. The Vanishing Family reads like a gripping medical mystery and an intimate family diary, forcing all of us to confront what it means to lose, and perhaps preserve, the self. This book is unforgettable.”
—Sanjay Gupta MD, associate professor of neurosurgery at Emory University, CNN chief medical correspondent, and author of the #1 New York Times bestseller Keep Sharp

“It is a marvelous paradox that Robert Kolker possesses in abundance exactly the qualities that frontotemporal dementia erases: warmth, engagement, generosity, empathy. Because he cares so deeply about every member of this ill-starred family, we care too. This is a memorably humane book whose power grows as, page by page, we cheer for each winner of the genetic coin toss and grieve for each loser.”
—Anne Fadiman, award-winning author of The Spirit Catches You and You Fall Down

The Vanishing Family is a deeply intimate portrait of a family confronting a shared genetic fate, and the love, courage, and choices that follow. Robert Kolker brings clarity and compassion to frontotemporal dementia, offering both insight and urgency through his storytelling. His deep commitment to the FTD community makes this an important contribution, and this family’s willingness to share their story is both powerful and generous.”
—Emma Heming Willis, New York Times-bestselling author of The Unexpected Journey and advocate for FTD and caregivers

“Robert Kolker has written a deeply moving portrait of a family trying to outrun a mind-ravaging disorder, the researchers who can identify the genetic mutation that causes it — but can do nothing to prevent or slow its progress — and the courage of those who persist despite research roadblocks and the terror and sorrow of knowing they have inherited what cannot be averted. What gives The Vanishing Family its haunting power is the deep humanity the author brings to a story that, like the specter of dementia itself, has urgent implications for us all.”
—Jonathan Rosen, author of The Best Minds, finalist for the Pulitzer Prize

“Those who have already read Robert Kolker’s work know what to expect from The Vanishing Family — a timely, urgent story in which one family’s personal history provides a window on larger medical/ethical issues. Those who have not are in for a treat. Deeply empathetic, this book reads like a thriller, but Kolker doesn’t pretend there are any real answers for families affected by this particular form of dementia. Moving, haunting, and profound.”
—Laura Lippman, New York Times-bestselling author of Lady in the Lake and What the Dead Know

“A moving account of one Pennsylvania family’s struggle with a rare inherited form of frontotemporal dementia. . . . Kolker skillfully translates complex neuroscience into accessible prose and balances scientific discovery with intimate family drama. . . . It’s a powerful examination of inheritance, resilience, and the human cost of medical uncertainty.”
Publishers Weekly

“A compelling view of dementia and its devastating effect on victims and family alike.”
Kirkus Reviews