A Perfect Life (33 page)

She shook her head, which to me, in the wheelchair, seemed seven feet high. “Dr. Butterworth, he says Dennis probably will get back most of what he's lost. Thank Jesus for that man, all he's done for my boy. It's James I'm keeping my eye on now. Better he ends up a momma's boy than he ends up like his brother.” She turned to leave. Her sneakers squeaked. “Whatever happened to that woman? What's her name, Dreary? Drury?”

My sorrow was made even more pronounced by the hormones. “She died,” I said, tears rising to my eyes. I hadn't wanted to attend Flora's funeral; it was too soon after we had buried Laurel. But Willie came with me. There was a brief service in an evangelical church near Pittsfield. Willie and I sat near the back, and no one seemed to notice us. Only when the dozen or so mourners moved outside for the burial did Flora's husband register that we had come. He strode over to me then, and I drew back, as if I were afraid he might strike me for torturing his wife without doing anything to relieve her suffering. Instead, he embraced
me in a grip so strong I could feel my child kick to free itself from being smothered.

“You tried,” he said. “You're the only goddamn person who gave a fuck about my wife.” Then he broke down and sobbed. His friends, huge men who seemed ill at ease in suits that barely concealed their tattoos, their thick gray beards and long gray hair showing signs of having been trimmed for this occasion, needed to support Mac through the remainder of the funeral. The ones who hadn't arrived on motorcycles herded him and his kids to their trucks and cars.

One of the women who remained behind came over and tried to comfort me. “Don't feel bad,” she said. “Death was a release for that poor woman. She finally found her peace with Jesus.” Which, I suppose, she had.

“Social Services ought to check on that family,” Rita told me in the hospital. “I never was too sure what I thought about the father.”

“He's all right,” I said. “He loves those kids. Maybe it'll be easier for him now that Flora's gone.” Except that I knew it wouldn't be. Mac might be able to derive some comfort in finding out that three of his four children didn't have the gene that had killed their mother. But his youngest child, Annette, the one who had stayed home from school to watch
Gilligan's Island
with her mother—Annette had tested positive.

I stroked my baby's head. “I'll try to remember to visit them and see how they're getting on.”

“You do that,” Rita said. “Maybe, if you want some company, I'll come along for the ride.”

The orderly pushed my wheelchair down the corridor.

“Thanks for sending me that magazine,” Rita called after us. “Didn't understand most of what you and Dr. O'Connell wrote, except the part with my name in it. But it sure looks nice on the coffee table. Something to pass on to the boys.”

After we brought Lila home, Honey and my father drove to Boston to help us. I tried to persuade them to rent a condo nearby. My father seemed to derive some small comfort from holding Lila. But Honey wouldn't hear of it. “You two are on your own now. There's a company from Toronto that's interested in buying the stores. We've got to make everything shipshape for when we show the big shots around.”

Sell the stores? It was one thing for my father to take a rest from the foundation, but to give up his stores? He was only sixty-eight. What would he do to keep his mind occupied? Honey, I guessed, was trying to distance them from the possibility that Willie or Ted might come down with Valentine's, which would mean that Lila would be at risk. But the baby started crying right then, and I never got the chance to ask.

In fact, Lila cried and screamed for hours.

“Here,” Willie said. “You hold her. I've got one last trick up my sleeve.”

I tried everything I could think of, but Lila kept wailing the same one-syllable sound over and over, as if she were crying out for something, or issuing a warning—
“Food!” perhaps, or “Fire!”—in a language none of us understood. Willie, in the meantime, had gotten his guitar. He had taken lessons as a kid, but after his father got sick, he gave it up. To stop Lila crying, he played the few songs he knew. I knew infants couldn't focus, but she seemed to be watching her father's hands. She held her fingers poised exactly like the fetus in my mother's copy of
Reproductive Biology
. Her father strummed the strings, and she laughed and drew back her lips, exposing that tiny bridge of flesh that was so like her aunt's. I couldn't help but wonder if, as Willie had said, a person's DNA could be written out and played like a musical score, what our daughter's genetic code might sound like.

He played “The Water Is Wide” and “Twinkle, Twinkle Little Star,” then some Spanish bolero thing that involved a trill, at which Lila flapped her arms. Her father trilled again, and I saw the repetition of notes in my head, a stutter in the code,
CGC CGC CGC.
The Valentine's mutation was a stutter like this trill. A genetic trill, I thought. A multiplication of DNA triplets where there should have been only one. The triplets might code for too much of some protein, some neurotransmitter that flooded the brain's synapses and wouldn't let them relax, or some chemical that ate away those nerves. The more repetitions a person's gene suffered, the more severe the disease. Or the earlier the onset. I promised I would allow myself three more months of rest, of grieving for my sister, of caring for my daughter, before I began the arduous task of setting up my own lab and finding some way to sequence the gene and prove that this vision I had been granted was true.

For the past fifteen years, I have managed not to show concern when Lila tripped on the stairs, spilled her orange juice, or appeared not to hear my request that she take out the trash. This past winter, when she spent hours staring into space instead of doing her homework, I managed to smile, knowing this to be the symptom of her crush on Robbie Koch, whose knowledge of the classics astounds even me. Whole weeks have gone by in which I never once thought about the odds that Lila's father inherited the gene for Valentine's and passed it to her.

Willie, after all, turned fifty-five last month without showing the slightest sign of being ill. As he blew out the candles on the German chocolate cake Lila and I had baked, I found myself marveling at how lucky we have been and how I ended up with so much more than I could have hoped. I have a husband. I have a daughter. I have a lab of my own, in the same building in Harvard Yard where I did my dissertation (I turned down an offer from Mass. General because my office would have overlooked the Charles). We own this triple-decker in Somerville, and Willie's cabin in New Hampshire—some of my happiest memories are of the weekends the three of us have spent there, the walks we have taken in those woods. Maybe Sumner was right. Collecting things does give your life more dimensions. It makes you feel richer, more real. Then again, the more you own, the more vulnerable you are to loss.

A few hours ago, Lila's stepbrother, Ted, called unexpectedly from Texas. I put Willie on the phone, then went up to my office to do some work. Lila was in her room, mooning about Rob, no doubt. But I couldn't concentrate on the paper I was supposed to write. The instant I heard Willie sob, I jumped up and raced down the stairs and found him in the kitchen, inspecting an arty portrait of Lila in the leotard she wore to her first ballet class. From that moment, I knew I would think of Lila's chances again and again. And the more I tried to stifle it, the more uncontrollably the thought would spring to mind. Would Lila think about it, too? How often do adolescents think about death? More likely, she would brood on her father's fate rather than her own. I wished we could keep the news to ourselves. But Lila has always been able to sense when either of us is upset.

Besides, we have made a point of telling her the truth. If we didn't, Willie said, she would only imagine worse. If she doesn't hear about Ted's diagnosis from us, she might hear the news from him. Having reached his midthirties and become, of all things, a federal marshal, Ted seems to view the truth as something for a posse to pursue and bring back, a philosophy apparently shared by the female Texas Ranger to whom he has proposed. According to this woman, the
results of the test she asked Ted to take wouldn't affect her commitment to marry him. She just wanted to know “what she was getting into,” so there “wouldn't be any surprises,” as if marriage were an ambush she hoped to pull off with as few casualties as possible.

The test is now available at centers around the country, as long as the client agrees to submit to the counseling procedures Vic's committee devised. Since the gene itself is known, the test can be done with nothing but the patient's DNA. “It's, like, a formality,” Ted told Willie, the test no more threatening than the FDA's inspection of a prime cut of beef. But when his result came back positive, Ted's fiancée said she would need another few months “to think things over.” I wanted to demand that Ted call off the engagement, but I couldn't interfere. Ted is a grown-up. He needs to make his own decisions.

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 swal
low 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
pe
nises
, 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.

“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.