A Perfect Life (24 page)

At the end of that week, while my labmates were at the deli drinking beer, I developed the blot from the Drurys' DNA. I moved in slow motion, aware of the pull and release of each muscle, the pressure of the linoleum against my feet. I tried not to think my result might be wrong. But I knew it was right. I just knew. Even before I typed the data into the computer, I was able to guess the answer. The printer hummed, the daisy wheel shrieked into place. The odds that the gene for Valentine's chorea was linked to the marker on chromosome twenty were several thousand to one. I ran the data again, and when the answer came out the same as the first time, I pulled a stream of paper from the printer and danced around the cubicle. I thought of calling Maureen so we would go out and get drunk and celebrate.

But I never made that call. How could I explain—to myself, Maureen, or anyone who understood anything about genetics—that I had found the needle in the haystack on, what, my ninth try? Call it luck. Intuition. A miracle. Chance. I was plagued by the possibility this was all a big joke, like the rubber mouse in the Seal-a-Meal bag, or the coal Maureen had once smeared around the eyepiece of my microscope on April Fool's, or the fake bottles of reagents she had arranged on my shelf—“Elixir of Youth,” “Cure for
Cancer,” “Drink Me.” But Maureen didn't have the power to make a marker seem linked to a gene if it wasn't. And she would never be that cruel. Nature wasn't like Willie, changing its mind about whether to bestow its favors or not. But I couldn't help but worry that Someone had this power, some mischievous god who was watching me and laughing, waiting to jump out and reveal his best trick.

The reporters, I was sure, would get everything wrong. That's why scientists submitted their results not to newspapers, but to journals. The editors sent the manuscript to a panel of experts for review. They accepted a paper only if its data and conclusions convinced the experts. I wished this same process could have been applied to other questions—for instance, whether you should marry a man whose love might bring you grief. But no one claims to be an expert on such matters, and I wouldn't trust anyone who did. Passion tends to be more persuasive than fact. The way in which you might represent your data to a scientist might not be the way you would represent that same data to yourself.

Vic made everyone in the lab swear not to reveal our findings. We couldn't be certain we were right until our paper was reviewed and accepted for publication, and the editors of
Cell
might retract their acceptance if the results were leaked to the press. Unfortunately, my father didn't know this. When I called to tell him we had found a marker for the gene, he reacted so strongly I forgot most of the things I intended to say. I should have driven out to Mule's Neck
to see his face when he learned that all his work had paid off and the longest long shot had come in. But events cascaded too quickly. We needed to repeat my experiments and triple-check the results; it could ruin a career to announce a discovery your colleagues couldn't reproduce. We needed to write the paper and rush it off to
Cell
before some other lab scooped us. I thought of summoning my father to Boston to tell him the good news in person, but he wouldn't have agreed to come unless I told him why.

So I called him that night, the night I found the marker. I heard him chewing on his brisket. “What is it, doll? What's the matter?”

I was about to give him the gift he had always wanted, and even though that gift might save my sister's life, I couldn't bring myself to tell him, to become
the good one
forever, to move so far ahead in whatever race Laurel and I were running she could never catch up.

But of course I did tell him. “We found it, Dad. The marker. We can use it to develop a test for the gene.”

The phone clattered and then went dead. Honey said she found him slumped against the counter, beating his forehead with the phone. She assumed one of their children must be sick. Or maybe it was Ted. She snatched away the phone. “Who is this!” she demanded. “Tell me who this is!”

I explained the good news. Then I listened to my father say, “I love you, Janie. I'm prouder than any father has any right to be. Maybe your mother's death wasn't for nothing.” And in the midst of all this turmoil, I neglected to warn him that he mustn't release the news until my paper came out in
Cell
. He called the
New York Times,
the
Washington
Post,
the
Wall Street Journal
, and all three major TV stations. Luckily, the discovery was too important for
Cell
to allow it to slip by. The editors rushed our paper into print two weeks ahead of schedule. The press conference was set for December 16.

I had daydreamed for years about writing a paper that would earn the respect of the fifty or so biologists in my field. Those few families at risk for Valentine's would likely care as well. But the prospect of revealing my results to a crowd of reporters was as unsettling as the notion of getting married in Yankee Stadium. Even more disconcerting, Vic informed me that I would need to lead the press conference. He would be up there on the stage, but he planned to use his few minutes in the limelight to make a plea for the NIH to formulate guidelines for genetic testing and to impose a moratorium until those guidelines were in place.

I shouldn't have been surprised. But Vic hadn't said a word about his reservations since his speech in New York. When I had shown him the blots, he assumed the expression of a man who is trying to believe he really has seen an angel. “Jane,” he said, and held the X-ray to the light, calling my name to make sure I had seen the visitor, too, and yes, it truly did have a halo and wings.

We sequestered ourselves in Vic's office to write the paper. He rarely went home, although his wife was in the last week of her pregnancy. We lived on food from the vending machines—potato chips and crackers were the only food I could tolerate anyway—and sandwiches Yosef brought us from the deli. I would doze on Vic's couch while he wrote a section of the paper, then he would grab a nap and I would
write the next section. It didn't matter who wrote what. Our minds thought the same thoughts, produced the same words, although Vic's talent for understatement was nearly biblical. “It is likely that Valentine's chorea is but the first of many hereditary diseases for which a marker will be found,” the first line read.

Finally, we were done. The Federal Express carrier scuffled in, slush on his boots, then scuffled out again with the envelope we gave him. I collapsed in Vic's arms. That was when he said he wouldn't be leading the press conference. “This isn't something new,” he said. “I've always had opinions. But I kept them to myself. I thought I could be one person at home and another person in the lab. There's never been a problem with that. Nothing I couldn't reconcile.” Amid the clutter on his desk stood a portrait of his wife and four sons, their faces as unremarkable as fingerprints. “Telling a parent that a fetus has a such-and-such chance of inheriting a disease and giving him or her no other choice but to abort that fetus . . . If that's where this has led us . . .”

I wasn't sure what I would do if I found out I was pregnant. But how could anyone oppose a test that would tell me if the fetus was carrying the gene? Anything that gave me more information was a blessing, I thought.

“Jane,” Vic said, “I never would have gotten into this if it hadn't been for you. I let my concern for your welfare get the better of my judgment. To be frank, I hadn't thought this out. In my wildest dreams, I couldn't imagine you would be this successful.” He patted my arm. “I hope you realize you've accomplished a wonderful thing. I didn't mean to steal your thunder.”

“Sure,” I said. Whatever thunder he meant, I didn't begrudge it. But whatever I had accomplished didn't seem wonderful. I felt as if I had committed some terrible crime and the punishment would soon come due.

The day of the press conference I spent nearly an hour staring stupidly into my closet, deciding if I should wear the suit I had bought for my medical school interviews twelve years earlier. I wasn't a salesman. My data were right. I didn't need to
sell
them. So what was I so scared of? Still, I put on the suit, and later, when the director of public relations at MIT led my father, Sumner, Vic, and me through the halls to the auditorium, I was glad I had worn it. If anything went wrong, I could go home and take off that suit and pretend that whatever had gone wrong had happened to someone else.

We took our places before the microphones. I felt as if I had been called upon to testify against some powerful wrongdoer, and anything I said would be turned against me. The reporters would try to stump me the way Mrs. Scipione had stumped me at the science fair. They would ask me a question that wasn't relevant and rob me of the prize that by all rights should have been mine.

My father welcomed the reporters, but he didn't understand the science well enough to answer their questions. Vic announced his intention to set up the NIH committee and said he would answer questions later, in the lobby. Then he sat down. This left Sumner to speak for all of us. I expected him to steal credit for the discovery. Instead, he was
the most humble of spokesmen, bringing clarity and charm to the chaos, paying proper due to everyone; a collector, after all, doesn't earn credit by pretending he has painted his artwork himself. I never could have kept my answers so brief or caused my voice to rise and fall in just the right spots. I had none of the grace Sumner had perfected in his years of telling patients what was killing them without subjecting them to lectures on base pairs and proteins or the neural gaps in their brains.

The reporters seemed grateful. They raised their hands and waited, as deferential as the undergraduates who usually occupied their seats. Sumner drew diagrams with colored markers on a board. The reporters took notes. Then one reporter stood and said that she had a question for Dr. Weiss. She wore a rumpled brown dress. The dark circles beneath her eyes made her look sad.

“Dr. Weiss,” she said, “isn't it true that you might carry the gene for Valentine's? Have you taken the test yet? If you haven't, do you ever intend to do so?”

I was too startled to say a word. Later, I would wonder why I hadn't refused to answer. But then, in that auditorium, I assumed the reporters set the rules. If they asked, I had to answer, the way I'd had to answer Mrs. Scipione's question. Besides, this reporter looked so exhausted I wanted to give her something that would allow her to go home and rest. I would take the test, wouldn't I? What choice did I have? How would it look if a scientist preferred ignorance to fact? But already I had begun to wonder if Willie wasn't right. As crippling as doubt was, to live without hope might be even more paralyzing.

The reporter asked again: “Have you taken the test?”

I tried to say no, but my tongue was too dry. “I haven't taken it yet,” I said finally, pleased I had gotten that much out. But the woman kept pressing.

“Why haven't you?” she said. And I didn't know what to say. That I hadn't had the time? That I wanted to enjoy my triumph for at least a few weeks before learning, as I feared, that I had the gene? That I might be pregnant? That I wasn't yet sure whether the fetus could be tested? The equations had too many variables. My father, for one. How would he react if it turned out that one or both of his daughters carried the gene for Valentine's? He hadn't brought that up. Maybe, like me, he had been distracted. Or he was having second thoughts.

Another reporter raised his hand. “Could you tell us what you plan to do about those people who donated blood for your experiments? Specifically, the ones who tested positive for the gene. Have they been informed of this fact?”

Thankfully, this was a question I had considered. Writing our paper, Vic and I had been careful to disguise the donors' identities. The results of all the tests were kept locked in Vic's office. They wouldn't be released to a donor unless he or she consented to receive counseling from Miriam Burns or one of our staff psychologists. Leaning closer to my microphone, I detailed the measures we had taken to protect the donors' privacy.
You're doing fine,
I thought.
Just finish this question and they'll leave you alone.

Then I stopped in midsentence. In my mind's eye, I saw Rita Nichols holding the blood she had drawn from me in New Jerusalem. What had happened to that sample? Had
my own DNA been tested with the rest? I knew I looked absentminded, standing on the stage staring at a pedigree no one else saw, but I needed to figure out if there were enough samples from my family to determine if I had the gene. Several years earlier, when I had begun working on this project, I had driven to Schenectady to see my aunt Yvette and my three adult cousins. Although crazy Aunt Yvette held my family responsible for her husband's early death, my father had convinced her to give a sample of her blood. Maybe it was possible to determine which pattern the marker took in my family with the samples we already had. Did everyone know my result except me? Did Vic know? Did Maureen?

“Dr. Weiss!” The reporters' mouths moved, but they seemed to be speaking underwater. “Do you plan to get married?” “Do you plan to have children?” “What about your sister? Will she agree to have the test?” Reporters lived for this, a
scoop
, the way scientists lived for exciting results. What would happen if they knew that Dusty Land's son was also at risk for Valentine's and I might be carrying his child? Standing there, I realized that I had held a tube of Willie's blood. I had stood watching as he poured that blood out the window. If only I could have tested both samples, Willie's and mine. I wondered if he would let me draw another sample, if doing so meant I might carry our child to term. But of course he would tell me no. Either a person wanted a child or she didn't. A parent shouldn't have the right to test the fetus and choose.

I must have mumbled something. Or maybe I stood there dumb. All I remember is that Sumner raised his hand and thanked everyone for coming. I slipped out a side door.
My family was planning a celebration, but they would have to celebrate without me. Laurel wasn't the only one who could fail to show up at family events.

I spent from five until midnight wandering Harvard Square, sipping cups of cocoa in various cafés and watching the homeless kids in front of the T station, hands jammed in their pockets, bobbing like pigeons for warmth. I read the titles in bookstores, browsing aisles I usually didn't visit. Philosophy. Religion. Child Care. At one in the morning, I went back home, warmed yet another cup of cocoa, then I let it grow cold as I puzzled out what to do. The next day would be Saturday. I didn't need to go into the lab. Even so, the phone in my apartment probably wouldn't stop ringing. My father and Honey would come by. Maureen would call. And Vic. Willie would call, I knew. He had left message after message, which I hadn't returned. I would buy a pregnancy test. If the test turned out positive, and I was certain it would (as a sort of compensation for my unbelievable good luck in finding the probe, I was sure I'd had the unbelievably bad luck to get pregnant the only time I had had sex in three years), I would need to tell the father.