The Inheritance

by Niki Kapsambelis

  “All my life, I’ve had this approach,” he said. “If there is one chance in a million, take it. Try it.”

  With lukewarm enthusiasm, he screened his last library.

  And then, he hit the jackpot: There was a huge signal on the X-ray film.

  In the constellation of DNA fragments, “this positive signal was, like, the largest planet of them all,” said Goldgaber. “Little tiny dots all over, and then bang! A big black spot.”

  Not sure if he should believe his eyes, Goldgaber went back to his petri dish and cloned more examples of the microscopic fragment that had given him such a strong signal. Eventually he had a dish with nothing but the same fragment in it.

  When he took X-rays this time, he found the same large spots, repeated over and over, wherever the amyloid gene lay. Goldgaber translated the DNA into its protein sequence, and there it was: the sequence of George Glenner’s amyloid beta protein. Just as Glenner had predicted, it was on chromosome 21, the same extra chromosome found in people who have Down syndrome. That was why both Down’s and Alzheimer’s patients had so much amyloid beta in their brains. And why people with Down syndrome who lived past the age of forty so often developed Alzheimer’s.

  When the amyloid precursor protein (APP) gene is mutated in Alzheimer’s patients—and there are about fifty different types of known mutations that occur there—it causes people to get the disease at a very young age, usually in their forties.

  But APP is not alone. At least two other genes also mutate and cause Alzheimer’s, and science continues to search for others. What they all have in common is this: They result in dementia, whether you get it in your thirties, your forties, or your eighties.

  “That’s it!” said the man who had missed the coming of spring while he toiled in the lab. “I am not working today anymore.”

  He drove over to Gajdusek’s house, where they shared the most expensive cognac the local liquor store carried.

  • • •

  Gajdusek urged Goldgaber to present his findings at a session of the Society for Neuroscience meeting in Washington, DC. Goldgaber showed up and, after some negotiation, was allowed to preempt the program and present his data as an unscheduled guest. In heavily accented English, he briefly explained his discovery to the packed audience, referring to transparencies as a visual aid. Word had spread that an unknown had found an amyloid gene; people sat in the walkways while still more squeezed through the door.

  While he spoke, the crowd was completely hushed; the silence confused him, because he had expected questions. As with Alois Alzheimer more than eighty years before, it seemed as though he had flopped.

  “If there are no questions, I thank you for your attention,” he said, and prepared to leave the podium.

  A man in the third row stood up, scratched his head, and said loudly: “What do you mean, there are no questions? Of course we have questions! Lots of questions!”

  Suddenly, the room was electrified. Unlike the underappreciative audiences of Alzheimer and Jean-François Foncin, these were people who finally had an idea of what they were up against. They weren’t fighting a statistically rare disease, and they weren’t fighting the inevitable consequences of old age. United by the rallying cry of Robert Katzman, they were fighting a public health crisis, propelled by the discovery that generations of families were genetically linked to the disease. Goldgaber had just advanced them an important step forward.

  Goldgaber answered questions as best he could, then stepped down and walked into the hall. Everywhere he went, people congratulated him, patted his shoulder, asked him for copies of the gene. He was feted, offered jobs in start-up companies dedicated to Alzheimer’s research. Goldgaber politely declined; academia was his home.

  But he had every reason to celebrate: He had seized the education that Soviet society would have denied him, escaped the oppression in his homeland, and found a job working in his field when so many other immigrants were forced to start from scratch.

  “The chance I got when Carleton hired me: one in a million,” he said. “I was not known. Just a junior researcher, an immigrant from Russia with one publication, no paper in Science, nothing. . . . I understood very clearly that for me, it was incredible luck.”

  A quarter of a century later, he still gets emotional at the thought.

  Five

  YOU ARE MY SUNSHINE

  AFTER A JUDGE committed Moe to the state mental hospital in Jamestown, Gail spent the next ten years in an extended state of limbo. It was an uneasy peace for a woman who could no longer tolerate her husband’s abuse but who had spent the past twenty-three years being a wife and mother.

  “I remember asking my mother: ‘I’m not a widow. I’m married, but he’s not here. I don’t know what to call myself,’ ” she said.

  “Call yourself a semi,” her mother answered. “You’re semi-married.”

  Though the family was well liked, their decision to commit Moe to an institution hadn’t sat well with some folks in town, court ruling or not. Even a few family members disapproved. Small-town judgment can be hard to handle. But the people behind those whispers didn’t have to live Gail’s life.

  Only she fully knew the terror of Moe’s late-night rampages, of being shoved around while her children listened to muffled shouts through bedroom doors. She knew the desperation of running to her neighbors for help while he fumbled in the bushes, naked, searching for nonexistent keys; of covering up the previous night’s scene with pranks and self-deprecating jokes. She knew the injustice of explaining to the man she loved that she was not cheating on him. She knew the helplessness of seeing him waste away, hundreds of miles from home, while he begged to see the family who had no way to take care of him, who didn’t remember him the way she did—the affectionate, rough-hewn man who had won her love as a teenager.

  Night after night, Gail pored over the paperwork associated with Moe’s illness, while Tioga grumbled that she should have been taking care of him herself. The emotional strain, coupled with the growing financial burden, eroded her once unsinkable optimism. Shortly after Moe left for Jamestown, she suffered the first of a series of nervous breakdowns and was hospitalized in Minot for about a week. Depression always seemed to hit her hardest in the spring; she wouldn’t be able to get out of bed, and Karla could hear the despair in her mother’s voice.

  “She would be so mad at herself because she just couldn’t pull herself out of it,” Karla recalled.

  Moe spent four months in Jamestown, which Gail euphemistically referred to as “a learning experience,” because Jamestown housed everybody, regardless of where they fell on the mental-health spectrum. No matter what your problem was, or if—as with Moe—nobody was sure what your problem was, Jamestown would take you. It was an imposing redbrick building, drab inside and out. When patients first arrived, they were all thrown together on the first floor before being redistributed.

  Gail was afraid to visit Moe at first, in case he blamed her for his situation, even though the entire matter had been decided by a judge. But when she did go to see him, she found him passive, almost plaintive. He apologized for hurting her and begged her to take him back.

  “I’ll be good, I’ll be good! I won’t get after you anymore,” he pleaded. It wasn’t clear whether he actually remembered those hellish nights or was simply apologizing for what he’d been told he’d done.

  But even if the judge had permitted Moe to return home, the family wouldn’t have been able to handle him. Gail did have some good news for him, though: Thanks to Moe’s military service, the veterans hospital in St. Cloud, Minnesota, had agreed to take him. It was eight hours away from Tioga, but it was still better than the cheerless pallor of Jamestown.

  St. Cloud would become Moe’s home for the next seven years, from December 5, 1978, until January 8, 1986, when the staff determined that his condition warranted a move to a nursing home. For the first year he was there, he asked constantly to return to Tioga, although his family visited him as often as the
y could.

  “I want to go home and be with my kids,” he pleaded. A nurse reported that he was “sitting in the dayroom sobbing as though his heart would break.”

  “I can’t help it. I want to talk to my wife,” he said.

  But none of his children would know any of those details until decades later, when Karla requested his medical records. By August 1980, Moe could not remember the names of all his offspring. A year later, he had stopped asking about them. By April 1985, he could not consistently respond to his own name. He sat strapped into a chair designed for geriatric patients, alternately laughing and crying.

  • • •

  Back in Tioga, unaware of their father’s heartbreak, the boys did their best to heal, as though they were finally able to exhale. Gail, her emotional reserves depleted, focused on keeping what was left of her family as intact as possible—even expanding to include her children’s friends. But that didn’t leave much energy for her to focus on discipline. That had always been Moe’s department, anyway; now that he was gone, the boys tested their limits.

  In the detached garage in the backyard was Moe’s car, a newer model that nobody had ever, ever been allowed to touch. “I think the day Dad left, that car went down the road,” Karla said. Not long afterward, Dean flipped it over into a water-filled ditch. A picture of the wreck made the newspaper. Soon after, Brian rolled his own car on Main Street, smashing into some storefronts.

  Part of their rebellion was fueled by their need to show the rest of Tioga, as visibly as possible, that they were stronger than what they had endured. No matter how embarrassing or degrading Moe’s behavior had been, it had not broken them. They were still the most entertaining family in a town where a certain amount of lawlessness was tolerated, even admired.

  Rather than worrying Gail even further, the boys’ antics provided welcome comic relief. They kept her young, reminding her what it was like to laugh. The indignities of Moe’s illness fell away then, and she was, once again, the madcap Gail who was always ready for anything. Karla admired her for that.

  Brian’s sense of humor and love of practical jokes deflected much of the anger and pain he experienced at the hands of his father. He was not a man given to reflection; when he had a problem, he confronted it physically in work and play. He was full of himself and loved to tease people, but he was also generous to a fault. His younger siblings idolized him, a responsibility he took seriously. He set for them the example that he had been raised to think of as the key to survival: Be a man who works hard, who can laugh at himself, but who can defend his family. Be a rule breaker.

  There was a softer side to Brian, too. While he was still away at school, he wrote to Moe, apologizing for how wild he had been when he lived in Tioga.

  I don’t want you and Mother to figure that it was your fault, he wrote, blaming his antics on small-town boredom and vowing that he had settled down. I still think your [sic the best father a son can have. He closed by asking Moe to keep the letter to himself—kind of a father to son letter.

  His longtime girlfriend, Debbie Thompson, adored him. They went to their first movie together—The Sound of Music—in elementary school, but didn’t start dating until tenth grade. After that, they were inseparable well past graduation; they were homecoming king and queen and the toast of several proms.

  If he’d asked Debbie to marry him back then, she would have. Like everyone else in Tioga, she loved the DeMoes, and she felt as though she were one of them. Instead, he left for Wahpeton. When he met new girls there, Debbie’s eighteen-year-old heart was broken.

  “I wanted to be in that family so badly,” she said. Walking in through the DeMoes’ back door was like coming home: There was always someone to pull up a chair, ready to concoct a plan to have fun, share a cup of coffee, tell an interesting story. Nobody ever seemed to be lonely inside those walls; to be inside was to be included, to be asked about your opinion, to be shown the latest project someone was working on. Even when the siblings squabbled, it was clear that they were watching out for one another, and they were devoted to Gail. They were effortlessly unpretentious. Gail could tell a bawdy joke as well as any of her boys; but she could also lend a sympathetic ear, and little children simply adored her. Debbie especially loved Gail. They stayed in touch for years after the breakup.

  Karla always loved the warmth of that nest, but when her father went to Jamestown, she was finally ready to leave it. She was grown now, and she felt as though she needed to move beyond Tioga. She followed her boyfriend to Fargo—a comparatively large city on the other side of the state, and to her, the other side of the world. It was time to stretch her boundaries; her mother was physically safe now, even if she was emotionally shaky. The boys would look out for her, and Karla herself was only a phone call away.

  • • •

  In many ways, Karla’s relationship with her future husband, Matt Hornstein, would echo Gail’s romance with Moe. They met at a dance in the eighth grade; Matt was a newcomer, which immediately caught Karla’s attention. His mother had died when he was fourteen, and he moved to Tioga to live with his aunt and uncle. Being the new kid gave him a certain currency in the little oil patch, where faces could become familiar to the point of monotony. He and Karla began dating, and soon they were an item. When Matt ran the projectors at his uncle’s movie theater, a short walk from the DeMoe house, Karla sometimes went up to see him and kiss in the darkness—a fact that still makes her blush. She brought him home to meet her family.

  Matt remembered Moe a bit more fondly than most; it was in Matt’s nature to be generous, and he was an easygoing, reasonable person. “I was scared to death of him, of course, because I was dating his daughter. But he always liked me,” Matt said. He thought of Moe as a quiet man who kept a nice yard, but he could see that Karla’s home life was difficult; she didn’t like being home if she could help it. He wanted to ease her burden.

  Because Matt had watched his mother die from cancer, he understood, on a primal level, the loss Karla was feeling as her father deteriorated. It was difficult for Karla to talk about, and sometimes, she cried.

  “I don’t know what draws people together, but it’s almost this magnetic force,” Matt said. “You’ve both been through that, and you both try to escape it.”

  Things weren’t always perfect for Karla and Matt. His agreeable nature was foreign to her, being so used as she was to her father’s irate rants. When they were in high school, she very publicly broke up with Matt in the school hallway, throwing his class ring back in his face in front of several other people.

  “I don’t want to date you anymore!” she shouted. “You’re too nice!”

  “It was traumatizing,” he said, laughing in hindsight. The split was temporary. Karla had been raised on the tale of her parents’ young love that lasted, but the tragic way their story was turning out left her wary of happy endings. In time, she would learn to trust Matt, to believe that they could build a life together. And Matt, motherless child that he once was, found in the DeMoes a place where he could grab a toehold on family life while filling the gaps in theirs.

  He worked as a drummer in a local band, harboring dreams of becoming a rock star. After graduation, he headed east to Fargo, Karla in tow. Four years later, they got married in Lake Tahoe, where a friend loaned them the use of a time-share property: he in a white satin-trimmed tuxedo, droopy mustache, and Allman Brothers hair, she in her best friend’s high-necked lace wedding dress.

  Gail and Doug accompanied them, and Doug—thrilled to be taking his first plane ride—gave his big sister away in the absence of their father. In 1983, it looked as though the young couple might have found the normalcy they’d both sought.

  • • •

  If Karla wanted to visit Moe, St. Cloud was only about three hours away. But like her siblings, Karla was at best ambivalent toward her father. Gail always defended Moe, saying the kids just didn’t remember what he was like before the disease. But it was impossible to forget those terrible ep
isodes when even her wild brothers were hiding from him, and their mother was running across the street to safety.

  Occasionally, Karla had glimpses into a softer side of her father that hinted at some truth in Gail’s claims. On one visit to St. Cloud, Karla and Gail took Moe on an outing to a mall. Spying a group of small children, Moe stopped in his tracks, excitedly waving his hands and trying to speak. It came out as gibberish.

  Karla worried that Moe was scaring the children and their parents, but Gail explained that he thought the kids were his own: “He’s going back in time,” she explained. Such memory distortions are common in Alzheimer’s patients.

  In truth, Moe’s absence—though it undoubtedly left her physically safer—left a void that Gail could never fill. Flirtatious by nature, she went on a few dates, even had boyfriends, but nobody quite approved of her having a romantic life when, technically, she was still married. She called and visited Moe, but she had no idea how long he would linger in his twilight world, or what he remembered from their lives together. It was the same cruel limbo that many spouses of Alzheimer’s patients endure, but Gail didn’t know that, or them, so she was navigating her new reality as best she could, trying not to worry about disapproving eyes.

  She stayed in touch with Moe’s family. His sister, Pat, had raised three daughters before divorcing her husband. Though they all lived near one another in the small towns that dot northern Wisconsin along Lake Superior, they were not close the way the DeMoes were. They bickered and often went for long spells without speaking to one another. Gail also busied herself with her children, keeping on top of their daily lives. She spoke often to Karla, who was now expecting a baby of her own, and she still had young Jamie to raise.

  • • •

  The DeMoe brothers lingered in Tioga longer than Karla and Lori, and the town shaped them as they moved into young adulthood. When Brian was twenty-two, he went to a party—as kids in Tioga have done for generations—at the Tioga Dam, where he met seventeen-year-old Christy Thorson. They dated for a few months, and things weren’t perfect—but instead of breaking up, they got married after Christy discovered she was pregnant. Like his father before him, Brian went to work in the oil fields, where he, too, would become known as an exceptionally hard worker. The other roughnecks nicknamed him “Toby Tyler, King of the Oil Patch.”