The Exiles (14 page)

For the first time, Nate could no longer let himself deny the phrase’s real meaning, the message that his conscious self had shoved aside years ago. He’d convinced himself that denial was better than a deadly diagnosis. But now he was out of denial and his mother’s words had reemerged in his head, whole.
It’s Huntington’s.

All of this activity that the
Times
writer had mistaken for drunkenness could easily have been a sober symptom of Huntington’s disease.

Nate’s mother had tried to warn Nate again, not long before her death—more than ten years after that family trip to Newport. Annemarie was weak with leukemia and living in a hospice at the time, a Greek Revival palace set back behind a thick thatch of trees. Every night when Nate visited, while he was on winter break from college, she spoke to him incessantly in a strained whisper, a steady stream of warnings and life lessons that left Nate not with hope for the future but with a generalized fear of what the coming years might hold. “Watch your father, Nathan,” she’d told her son on one of his last nights by her side, her Austrian accent growing stronger as she grew weaker. “It is inborn,
lieben,
if he gets sick, like his father, if you get sick, he will need to be watched, you will need to be watched.”

It seemed impossible, back then, that George would ever falter—like his buildings, he was indestructible—so despite his mother’s vague warnings, Nate distracted himself with the present. He didn’t heed her at all.
It’s nothing but deathbed talk,
is what Nate told himself.
It’s nothing. She’s on drugs.
After all, there was a chance that George hadn’t inherited the disease from his father. Future be damned! Nate filled his time and his
mind with school and then with work, with Emily, and finally with his son.
His son.
He’d been so alone until Emily and Trevor came along. He’d developed a hard exterior, a buffer against loss. But now he had Trevor. This was not a diseased family. That was a fact that he had let himself believe without wavering. Now, thinking about the risks he’d taken, he cowered inside.

According to every single website and medical manual that Nate had been able to track down, Huntington’s early symptoms included the drunklike
ceaseless jerking and uncontrollable movements of the limbs, trunk, and face.
These were the same movements Nate had noticed in his grandfather the one time he saw him, in 1974. That year, Nate’s grandfather would have been around the same age George was now. Despite Nate’s usual facility for denial, this coincidence was too blatant to disregard. George might have Huntington’s, and he might have passed it down to Nate.

Two weeks ago, en route from work to home, Nate hopped off the subway at Thirty-Fourth Street and walked west, toward Penn Station. There, nine floors atop a Duane Reade in a dated high-rise that leased space by the month, sat the offices of the Huntington’s Disease Society of America. Nate had found the society after searching online, its name linked to that of Woody Guthrie, the only celebrity who, from what he could tell, had suffered from the disease. Nate figured he’d stop by their office and claim that his group at work was looking for a new cause or whatnot. Or he could pretend he was looking for a different office in the building and had come to the HDSA by mistake. He merely wanted to see the place, pick up some literature that he could be certain was accurate.

He took the elevator to the ninth floor, then followed the black-and-white signs to suite 902, where two men came out of the door, followed by a woman pushing a wheelchair. Nate
hung back a bit and watched them. No, not
them.
He barely noticed the men and the woman. He was looking at the girl in the wheelchair. He couldn’t place her age—somewhere between twenty and forty he assumed, but she was too disfigured to be sure. There was something childlike about her face, about the open, empty expression. Her bony lower body remained still, cramped in the chair, but her upper body was fluid, in constant movement—her angular left shoulder dipping suddenly down toward her hip and then up again, and repeat—the kind of movement that brought to mind a child’s toy on an oval track, speeding up for the straightaways and then banking itself at each curve. This wasn’t the stop-and-start jerkiness of the Parkinson’s patients Nate had seen in late-night TV ads. This movement was steady, unending. Dip and then up and dip. And now, a hand shot toward her head and back down again. She’d lost control of her body. The odd near-grace of these movements immediately brought Nate back to his own early years. To the grandfather he’d seen in Narragansett.

Once the wheelchair was fully in the hallway, the woman pushing it turned around and locked the office door. Nate looked at his watch. It was 5:20 p.m. Of course they’d be closing up.

“Sorry,” the man in front said to Nate, apologizing, it seemed, for blocking the hallway.

“No problem,” Nate said, squeezing past them with the purposefulness of a guy on his way to an office down the hall.

When the group was barely behind him, Nate heard a grunt, a few deep, connected tones. He turned. The girl in the chair had made the noise. The woman looked down at her and said, “Maybe.” It seemed the girl had asked a question, though to Nate it had been just noise. Then one of the men said, “I’ll feed her when we get home.”

Nate turned a corner in the hall and waited. Five minutes, ten, just to be sure that the four were gone. So that was what Huntington’s looked like in someone his own age, Nate thought. That was the face of Huntington’s. He tried not to see himself in that wheelchair. He tried to tell himself that maybe the disease would hit him late, as it had his father. He tried to convince himself that he didn’t have the gene, anyway. That might be true, in fact. He told himself this. He tried to fill his head with thoughts of anything, afraid of what might come if he left any mental space unoccupied. And then he saw the face and body of that girl in his mind, and thought about Emily, who still knew nothing. He had to talk to her. He had to talk to her sometime. They needed to talk about Trevor.

Huntington’s was genetic and dominant: The only way to get it was from a parent. If Nate’s grandfather had the disease, there were even odds that he’d passed it down to Nate’s father. And if Nate’s father had it, that gave Nate a 50 percent chance of getting it himself: Either his father had passed down his Huntington’s gene or he had spared Nate by giving him the healthy gene with which the tainted one was paired. Worst of all, there were no silent carriers of Huntington’s—anyone who inherited the gene had a 100 percent chance of, sooner or later, developing the disease and all of its untreatable, escalating, fatal side effects. If George had the disease, he would die from it, horribly. If he’d passed it down to Nate, Nate would die in the same way.

For those who came down with the disease early in their lives—in their twenties, thirties, or forties—the first symptoms were cognitive and psychiatric. Depression, mood swings, irritability, extreme and unexplainable hostility, paranoia, psychosis. People were hesitant to acknowledge this disease, refusing to alert their younger generations that it ran in the family: Lunacy
was nothing to be proud of. These brain-related symptoms often staked their claim when the patient was in his or her thirties or early forties, though sometimes later. Sometimes earlier. Next, the physical deterioration set in: the chorea shakes, clumsiness, loss of balance, inability to swallow, stumbling, incontinence. The patient could end up in diapers and with Huntington’s characteristic grimace frozen on his face. He might have to be spoon-fed by a spouse. He might find himself abusing his caretakers and kids, spewing unconscious and angry expletives between bites of mashed peas as the disease progressed toward death, without remission, over the course of ten to twenty-five years. In the days that followed Nate’s visit to the HSDA office, he thought, frequently, about how the wheelchair-bound woman seemed to have already lost her entire self.

The few Huntington’s patients who came down with the disease later in their lives, in their sixties or so like George, were often spared the mental and cognitive symptoms and suffered only the devastating physical effects. Nate, if he had the gene, could come down with the symptoms any time. This year, perhaps. Or like George, older.

Once Nate understood these facts of the disease, he became consumed with the odds of it. George had had two children, and the odds of passing down the gene were fifty-fifty. So maybe Charlie was the kid who got the gene. If that was true, Nate imagined that his brother’s death, hit by a car at age seventeen in 1985 while biking to his last swim meet of the summer, was merciful. Charlie had been slammed by a car driving in the wrong lane (a sober driver who’d blacked out from dehydration and the heat, they said, for only a second). Nate hadn’t been there but he could picture it: Charlie hunched forward over the wide handlebars of his red Peugeot, a brand-new model that was
half birthday gift from their mother, half paid for out of Charlie’s allowance savings. He always rode it with the determination of a professional competing in a late leg of the Tour de France: his face intent, his legs circling at a rapid pace. When Nate tried to imagine the moment of Charlie’s death, he saw him pedaling close to the side of the road, in the breakdown lane, exactly where he should have been. Charlie, who’d been wearing cutoff chino shorts and the ratty gray-striped T-shirt that he seemed to wear all of the time, didn’t flout rules. The accident had been the fault of the car’s driver, but that fact couldn’t bring Charlie back. Perhaps it was a blessing for Charlie.

And then there was a possibility that neither Nate nor Charlie had inherited the gene, or perhaps both of them had. Genetics, like a coin toss: completely mathematical and a function of chance.

For now Nate seemed safe. He had shown no unusual shakes or memory loss. He was mentally acute enough to understand that it would be wise to finally speak to his father—to confirm whether George really had inherited the disease. He was also as aware as ever of his own weaknesses and limitations. He didn’t yet have the strength to confront George for their first ever Bedecker heart-to-heart chat.

First, Nate wanted to see if he could confirm his hunches himself. There could be clues hidden like a treasure chest just across the harbor in Narragansett, in the house that Nate’s grandfather had called home until George closed it up decades ago, turning it into his own private storage locker. It was the final resting place of their family history. It was also just a short drive away from the town that Nate, as of this weekend, was claiming as his own home.

Nate looked at Emily across the lounge. He caught her eye
and she quickly looked away again, down into her own lap and then at Trevor, whom she’d propped on the seat next to her. Nate watched as she dipped her finger into the tub of baby food they’d brought down with them, something green and indistinguishable, and then smeared a bit of it on the boy’s nose. Trevor smiled, his cheeks taut and red, and slowly broke out into a high-pitched laugh.

PART III

Sunday

CHAPTER
13

The Drive to Narragansett

F
OR WHAT WOULD
G
EORGE
Bedecker be remembered? The more he considered this question—while biding time on the shoulder of Route 1, in the vicinity of Guilford, Connecticut—he was increasingly certain that if he was, in truth, remembered at all it would be for the wrong things. For dying a scandalous death—though he was trying to save himself from that possibility with this drive toward privacy. Or he would be memorialized for building the tired Biblioteca Rotunda in Mexico City. Or the Merchant Travelers Tower in Des Moines, a mixed commercial/residential complex with which he’d never been comfortable, but that, with its high construction costs and endless adaptations, had kept his office running for five years. Over the past century, architecture had proven itself a viable art form but a failure as a business model, and the tension between the two—between style and practicality—had been stretched tight, torqued. George wanted to be remembered for the pieces he’d conjured that were unwaveringly functional, aesthetically new, and affordable for their select uses. The Glasgow Conservatory
obviously came to mind. And also the Faculty and Married Students Housing Park at the University of Virginia, a stretch of interconnected low-rises that reimagined group living as a series of nestled bungalows in interlocking grids. The Cymbalists Synagogue and Heritage Center in Tel Aviv would also make George’s personal favorites list, although the building, as he conceived it, was never erected. The commission went to Mario Botta in the end. Despite the fact that George’s proposal existed only as a model and computer rendering, the design continued to inspire him.

And then there was Bedecker House, his own residence for nearly two decades. Square and spare and utilitarian, it honored Mies van der Rohe and Le Corbusier, envisioning International Style as a launching pad for something inherently more intimate. He’d seen the residence not only as a space where his own family would live but also as a springboard for what he assumed would be a movement to follow. When the house turned into nothing more than a haven for his family’s idiosyncratic life, and then that family slowly left it, he sold the building to a young couple who, too, could envision a future in the house. Unlike Gropius’s former home, Bedecker House would be no memorial open for public tours. It was designed to be lived in.

The mere act of mentally reconjuring these works calmed George’s shakes as he stood on the side of the Connecticut highway, where seamless pavement met raw dirt. With each of George’s buildings he’d aimed to make people’s lives better, to provide consolation in the form of structure. This was what he could offer. George leaned against the Audi, held his hands in front of his face, stretching his squat fingers, and felt relief. His hands had trembled and jerked on the steering wheel one mile back, the car swerving slightly. George knew that even a small aberration could be a matter of life and death on the road.