After Willie told me all this, he went out to take a walk while I sat in the kitchen brooding. Next week, when Honey and my father fly east from Palm Springs, I will break the news to them. I envy their ignorance. For them, Lila, Willie, and Ted are still free of the gene. The only benefit is that my father might rouse himself from the despondency in which he has been mired for so long. After he sold his stores, he went back to helping Vic supervise the foundation, but only in the most perfunctory way. Perhaps that will change. My father would stay alive and keep running the foundation forever if it might save his granddaughter a moment’s illness.
I hate to say this, but I have often thought about waiting until Lila is asleep, then sneaking into her room and stealing enough blood to run the test. But I don’t have a vampire’s stealth. It would violate Vic’s protocol to run the test on a minor. And this, the strongest argument: instead of lowering my daughter’s risk from 0.5 to 0, the test might raise that chance to 1.
The tumbler on the front door clicks. I jump up, not wanting Willie to figure out that I have been sitting in this chair the entire time, thinking about our lives, justifying the decisions we both made, or put off making. I boil some water to cook lasagna. Willie goes to the refrigerator and unclips the report card from the hand-painted swan magnet Lila brought home in third grade: A’s in music and art, an A+ in biology, A’s in English and math. “This means I have it, too, doesn’t it?” he asks, as offhandedly as if he were asking a question about whether I have remembered to turn off the stove.
I catch my breath and tell him, “Yes, sweetheart, it does.” Although I am very quick to add that in cases like his, in which the onset is so late, the disease progresses slowly. He might live a relatively unfettered life through his fifties and early sixties.
“Thank you,” he says, as if I were a judge who has handed down a sentence far more lenient than the evidence might allow.
He kisses me, then wanders to the living room, where he searches for a book about Buddhist philosophy he hasn’t touched in years. He takes it from the shelf and sits in a chair to read it. For a minute, I see him as he might look ten or fifteen years in the future, slumped in that same chair, shaking for most of any given day, no longer able to swallow solid food, so I have to spoon pap in his mouth, the way I once fed my mother. For all I know, all three of them will end up sick, maybe at the same time. If Willie is incapacitated by Valentine’s, I will be left to care for Ted.
I go to him and take away the book. I climb in his lap and lay my head against his chest.
“Would you have wanted to know?” he asks. “All those years ago . . . Would you have married me if you had known?” There is a bitter twist to his voice. “Both of us, we thought we could outguess this thing.”
He doesn’t finish the thought. If he ever does, I will counter with the charge that my test isn’t what is causing him this pain; it’s his stubborn insistence on our having a child. But even if I had known, would I have not married Willie? Do I wish my darling Lila had never been born? I hope neither of us will ever make any such accusations. The mutual deterrence of knowing each of us possesses such a catastrophic weapon will help enforce the peace.
“I have to go up there now,” I say. “I have to go tell her.”
“What?” he says. “Oh, Jesus. I haven’t thought any of this through.”
“She’ll figure it out,” I say. “She’ll know something’s wrong the minute we sit down to dinner.”
He nods. “Thanks,” he says. “It’s not fair to you to have to do it. But I’m just not ready.”
“I know.” I squeeze his hand, then start the long climb up those stairs. I knock at Lila’s door. She is lying across her bed, reading a book about Greek gods and goddesses.
“Hi, Mom,” she says, not because she is particularly glad to see me, but because her love for Robbie has flooded her brain with excess love for everything on the planet. “Sweetheart,” I say, “there’s something you need to know.”
She listens. She pays attention. But I know none of this is sinking in. She is only fifteen. She doesn’t want anything to spoil the pleasure of being in love. Besides, we have shielded her too well. She has never seen anyone with full-blown Valentine’s. I assure her that her father and stepbrother are fine for now, that it will be years before either one shows signs of the condition. Like most kids, she trusts medicine to cure even the worst disease. As for herself, maybe she believes, as her aunt and I once did, that being at risk for a malady with the misleadingly romantic name of Valentine’s disease is somehow exciting.
“Thanks for telling me, Mom.” She gives me a hug, as if I am the one who needs consoling. “Is Dad here? I just have two chapters left in my book. Do you mind if I finish before I come down for dinner?”
I kiss her and go downstairs, sick with relief at having told her, unsettled by how well she took the news. “She seems okay with it,” I tell Willie. “At least for now.”
I put dinner on the table. When Lila comes down, she gives her dad a hug. “I love you,” she says.
“I love you, too,” he tells her back.
But that’s all any of us say right then. We eat the lasagna in silence, except when Lila blurts out that Robbie has written an updated version of a play called Lysistrata. “We’re putting it on at school,” she says. “Is it okay if I play one of the women who won’t let their husbands have sex until they end some war? The guys are supposed to wear these big, you know, versions of their, you know, their penises, and we aren’t sure if the principal will let us use the props or not. But even if she does, I think everyone in the cast will need permission.”
We tell her she can be in the play no matter what. She thanks us, then runs back up to her room, no doubt so she can phone Robbie with the news. I scrape the leftovers in the trash—all three of us have left most of the lasagna on our plates—and wash the pan. Willie pours himself some chocolate milk and goes back in the living room to read his book. After I finish cleaning up, I go upstairs and take a bath. It’s barely nine, but I get in bed. That’s when Lila appears at my door. She’s wearing the lacy nightshirt her aunt Laurel once brought me from Brussels. It bothers me that Lila thinks her aunt’s life as a dancer was far more glamorous than my hours in the lab or her father’s visits to the companies he invests in. What if her response to learning she’s at risk for Valentine’s mimics my sister’s? The thought of Lila breaking up with Robbie—or any other boy—makes my heart ache so badly that I would betroth her right now, if such things were still done. All her complaints about the fun she’s had to miss, practicing Laurel’s cello . . . Keep playing, I want to say. Play the best you can, for as long as you’re able. Don’t you dare give it up!
“Mom?” Lila asks. “Do you mind if I sleep in your bed tonight?”
She is carrying the battered stuffed mouse she put away the day she started kindergarten. In her room lives a real mouse, a distant descendant of the mouse I had predicted had a rodent variation of Valentine’s disease, but which lived a long life—for a mouse, that is—and died of old age. In homozygotes, we think now, the two faulty chromosomes cancel each other out. Some overload is reached, and the brain finds a way to compensate for the damage. If the same is true for humans, then Lila might stand a better chance if I carried the gene for Valentine’s and she got a copy of the bad gene from me as well as from her dad.
Then again, that’s only a conjecture. There’s so much we still don’t know. My theory about the mutation being a triplet repeat turned out to be true, but I haven’t been able to isolate the protein for which the gene codes. And the gene’s effects on the nervous system have proven to be much more obscure than anyone could have predicted. I disagree with Sumner about how to spend our grants, whether at the level of molecules and genes, or the gross anatomy of the brain. But I can’t afford to push our disagreements too far. Who knows but that Sumner might find the cure first. And he’s still the best clinician in the country when it comes to treating Valentine’s.
&nb
sp; “It’s not fair,” Lila complains, then climbs on her father’s side of the bed. She doesn’t ask where he is. Maybe she has seen him reading in the living room. Or she already has become reluctant to bring her troubles to him. She snuggles closer and pounds the mattress. “Why Dad?” she sobs. “Why Ted?”
I refuse to talk statistics. I simply nuzzle her hair, which is soft but unwashed—it’s as if she is two people, the girl who can go weeks without washing her hair, and that other girl, the one who washes her hair every night with lemon juice and applies to her face whatever beauty treatment the teen journals advise; the girl who says she wants to be a marine biologist, and some other girl who says she will kill herself if she doesn’t get the lead in some ninth-grade production of The Wizard of Oz.
“What if I pray?” she asks. “There has to be something I can do.”
“No, there isn’t,” I tell her furiously. “You mustn’t ever think there is.” And then, although I know it is exactly the wrong thing to say, “I won’t let anything bad happen. To any of us. Lila, I promise.”
That’s when I decide I will get up even earlier the next morning than I usually do. I have so few years to save my husband. To save his son. To allow my daughter to have a child without being afraid she might pass on this curse to yet another generation. Surely, by the first or second decade of the twenty-first century, someone will have found a cure for Valentine’s. But who can I rely on to be as devoted and obsessed as I am? So yes, I will get up even earlier. I will go into the lab and work harder than ever, become even more efficient. I will fiddle with the budget to find the money to hire more postdocs—sometimes, my father’s lessons in accounting come in handier than anything I learned in grad school. And I will need to call Vic, who, in addition to running his lab and sitting on the board of the Valentine’s foundation, holds an appointment with the NIH, an organization that is currently considering two of my grants. I will cancel my vacation to New York, although Maureen will be hurt—we were supposed to go shopping for her wedding dress.
I will attend Maureen’s wedding. How could I disappoint not only my oldest and dearest friend, but also my daughter? When Lila heard the news that her auntie Maureen was engaged to the man who runs the lab across the hall from her own lab at Columbia—a lab Maureen was offered after twelve years in exile in Salt Lake City—she was so excited she danced around the kitchen. “That is so romantic! She just met the guy, like, two months ago! Does that count as love at first sight?” A beat later, more sober, she asked if her aunt Maureen was too old to have kids. I nodded; she was. Her fiancé was even older, and they both were too busy to have a child. I presented Lila with all the same excuses Maureen had given me to hide her disappointment that she would never have a daughter like mine.
So the three of us will go to Manhattan for the wedding. We will buy tickets to a ballet at Lincoln Center, tour the Museum of Natural History, take in MoMA and the Met. Yosef will steal an afternoon from work and treat us all to lunch. “Only not Russian Tea Room,” he will joke. “I’ve got more than enough Russkies at home.” Yosef finally managed to bring his family to New York. He married a girl he only half loved to help him care for his parents, and they now have three kids. Yosef hates his job—I often find brochures from his company in my mailbox, the ads for enzymes and gels and new biotechnological gizmos overlaid with Yosef’s handwritten claims: “Puts hair on chest!” or, “Shines shoes and cures female complaint!” But he loves the money it allows him to lavish on his kids, on his parents, and on us. Once, he took Lila on a spree to FAO Schwarz. If I tell him she might have the gene for Valentine’s, he will want to take her on a spree to Bloomingdale’s. Then again, what harm could that do? Why should I deny Lila anything she might enjoy? Although I would hate to treat her as if she were one of those kids who gets to go to Disney World because she has only a few months to live. For all we know, she’s perfectly healthy.
I pull her closer to my chest, then find myself thinking of the very first time I ever nursed her. That awful obstetrician had instructed me to allow my daughter no more than five minutes on each side. I debated going back to my room to get a watch, but Lila was already batting a breast as if it were a vending machine that wouldn’t give her what she paid for. I squeezed the swollen nipple and helped her latch on. She closed her eyes to concentrate. I felt a stab of pain, then a surge of relief as she started to drain my milk. I had nothing to do but study her face, mouth working, eyes shut. I watched that face for so long, I had the sensation that Lila and I were one. And I drew as much contentment from watching that face as Lila seemed to draw from sucking at my nipple. Not a single clock marked those minutes. Time hadn’t merely stopped. It had ceased to exist.
Acknowledgments
This book was inspired by the dedication and brilliance of the men and women who found the marker for Huntington’s chorea, a story wonderfully told by Alice Wexler in her memoir, Mapping Fate. Readers may notice certain parallels between the histories of Jane Weiss and the neurobiologist Nancy Wexler, or between Arlo Guthrie and Willie Land. That said, A Perfect Life is entirely a work of fiction, and no resemblance is intended between the occurrences and characters portrayed in this book and any actual events or people.
I am deeply grateful to those who provided me with advice and encouragement while I was researching, writing, and editing this novel: Charles Baxter, Suzanne Berne, Nicholas Delbanco, Tom Glaser, Linda Gregerson, Sharon Greytak, David Housman, Marcie Hershman, Maria Massie, Maxine Rodburg, Adam Schwartz, and Therese Stanton. Most of all, I want to thank my agent, Jenni Ferrari-Adler; my editor, Megan Lynch; and everyone at Ecco Press who has helped to give life to this book.
About the Author
EILEEN POLLACK holds a B.S. in physics from Yale and an MFA in fiction from the Iowa Writers’ Workshop. She is the author of two story collections, two previous novels, and two books of nonfiction, and has received fellowships from the NEA, the Michener Foundation, and the Rona Jaffe Foundation. Her work has been included in the Best American Short Stories and the Best American Essays series. She is a former director and current faculty member of the Helen Zell MFA program in creative writing at the University of Michigan. She divides her time between Ann Arbor, Michigan, and New York City.
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A PERFECT LIFE. Copyright © 2016 by Eileen Pollack. All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the nonexclusive, nontransferable right to access and read the text of this e-book on-screen. No part of this text may be reproduced, transmitted, downloaded, decompiled, reverse-engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereafter invented, without the express written permission of HarperCollins e-books.
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