Dedication
For Tom
Contents
Dedication
Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5
Chapter 6
Chapter 7
Chapter 8
Chapter 9
Chapter 10
Chapter 11
Chapter 12
Chapter 13
Chapter 14
Chapter 15
Chapter 16
Chapter 17
Chapter 18
Chapter 19
Chapter 20
Chapter 21
Chapter 22
Acknowledgments
About the Author
Credits
Copyright
About the Publisher
1
In another few minutes, I will need to climb the stairs and explain to my daughter why her father and I gave her life when we knew she would need to live it watching the clock, watching herself. Maybe Lila won’t hold her fate against me any more than I held my fate against my parents. But then, I was older. I knew they had acted out of ignorance. And how could I condemn the very people to whom I owed my existence, enthralled as I was with the mystery, the miracle, of being Jane Weiss?
Maybe we are divided into those of us who think that our parents’ choice in giving birth needs to be explained, and those for whom such a demand would seem incredible. We fell in love. We got married. We had a child—we had you. We are divided, too, I think, into those of us who live with a clock ticking in our heads, and those of us who don’t. I have heard my own clock ticking since my earliest years, a decade before I learned that the word “Valentine’s” means more to our family than a holiday of love.
The story I am about to tell begins with such a clock. Or more accurately, with a timer, the cheap plastic kind you use to cook eggs. I was working in my lab. Not the lab I work in now. This was my lab at MIT, when I was only a postdoc. It was a Friday, at six P.M., and I could hear the timer ticking backward toward zero. I was due to meet my father across the bridge in Boston in less than fifteen minutes, but first I had to extract the DNA from one last blood sample. In my right hand I held a sterile pipette, in my left hand a test tube. The iron-heavy red cells had sunk to the bottom. White cells floated in the middle. A faint yellow serum lay spread across the top. It reminded me of the “tropical” Jell-O parfaits my mother used to serve before she stopped cooking.
I started to work the rubber cork from the test tube with the thumb and index finger of the same hand that held it. I had done this a million times. It was one of those small acts of competence that helps us to believe we are what we claim to be, we know what we are doing. The mistake I made this time was watching my hand, thinking about my clumsiness, worrying. I foresaw what would happen. I would be left holding the cap while my other three fingers let the tube of blood fall. I tried to prevent this, but my hand wouldn’t respond. The tube dropped to the linoleum.
Flora Drury, the woman from whose veins this blood had come, was thirty-four years old, one year older than I was, but she looked at least fifty. When I had entered the Drurys’ trailer earlier that day, she had been sitting in the kitchen with her eyes rolled toward the light, head swiveled, fingers clutching the edge of her red vinyl chair. She vibrated as if that chair were electrified. Her teeth chattered—click, click, click. Flora’s husband, Mac, a jut-toothed man in overalls, had given his consent for the procedure. But I insisted on making clear to every new donor why we needed his or her blood. As I pronounced the words “a cure for Valentine’s chorea,” Flora’s shaking grew frenzied. The metal legs of her chair danced across the floor. Flora’s head, which was covered with dry reddish tufts, like the petals on a marigold, rattled on her neck. I knew what was coming. But knowing what is coming doesn’t always calm us. The more a person knows, the more her nerves tighten. When Flora barked, “Yes!,” my heart catapulted around my chest. I tried a trick I had perfected: eyes closed, I inhaled, imagining the air to be liquid concrete, filling my body, hardening. By the time I had let my breath out, the trembling had nearly stopped.
“All right then,” I said. I pried Flora’s hands from the chair, then held her fragile arm while Rita Nichols, our nurse, tied a length of rubber tubing around Flora’s bicep, pinched the wax-paper skin to locate a vein, and plunged a needle deep in the crook of Flora’s elbow. After a few moments, Rita yanked the needle out. A bright drop of blood rose from Flora’s skin, and Rita slapped it with a gauze pad. She was always brusque with donors. (“You tell that husband of yours he’d better keep you clean or I’ll report him to the authorities,” she had told Flora earlier, with her husband looking on.) I was brusque, but for a different reason. If I had opened my mouth to tell Flora I was sorry for any pain we might cause, I wouldn’t have been able to stop apologizing.
The tube of Flora’s blood was as foamy and warm as freshly cooked jam. I slipped it in the rack beside the other samples we had drawn from Flora’s family. (Not even the youngest child, a boy of six, had made a fuss or cried. His father loomed above us, snapping one of Rita’s used tourniquets, and I hoped the boy’s obedience came from love and not fear.) I was disposing of the syringes when Flora leaped from her chair and spun about the room, arms flailing, chin tucked against her chest.
“Shit on Valentine’s!” she screamed. Then she froze where she stood. Speechless, immobile, arms overhead, she looked like a tuning fork still humming from the hammer’s last blow.
Now, in the lab, I knelt beside my bench trying to accept that I would need to drive back to the Drurys’ trailer in Pittsfield and ask for more blood. Not that I would admit I had spilled the first sample. Flora’s husband wouldn’t ask. At worst, I could lie and say I needed more of Flora’s blood because her genes were so interesting, so vital for determining the cause of the illness that threatened us all. None of this calmed me. The drive to New Hampshire and back would consume half a day. I could see myself sitting in Rita’s rusty Chevette, urging it on. The car would go slower the harder I wished, until, by the time we arrived at Flora’s trailer, I would be clutching the dash and struggling to draw a breath.
What I dreaded wasn’t seeing Flora Drury so much as becoming her. One day, I, too, might be sitting in a kitchen chair, shaking and shaking, until I shot up and flung myself about the room shouting obscenities, as my mother had done that interminable year before she died of Valentine’s. A fifty-fifty chance. Heads, I was healthy. Tails, I had inherited the disease that killed my mother, her two brothers, and their father before them. Of the twenty-three pairs of chromosomes in each of my mother’s cells, one pair contained a good and a bad gene. The egg from which I had developed might have contained a copy of the good gene, or maybe it contained the bad. Whichever it was, that gene was hidden among the two hundred thousand other genes that were strung along my chromosomes, imperceptible pearls on a necklace too tiny to be worn by a flea. Even with all the donors I had bled and all the DNA I had studied, I didn’t have the slightest clue where to look.
The earliest sign of Valentine’s is clumsiness. And I was nothing if I wasn’t clumsy. Never mind that the prospect of seeing my father, even on time, made me so nervous I could have dropped a dozen test tubes. There always were reasons. Rushing to the sink for a wad of paper towels to wipe up Flora’s blood, I bumped into Susan Bate. The accident was her fault. Susan was always scurrying here and there in her big plastic goggles, chattering, “Shit-shit-shit-shit,” like a squirrel that suspects its nuts have been stolen. Even scientists less frenzied than Susan Bate and I bumped into each other in the course of a day. Knowing why we had collided didn’t comfort me, any more than it comforted me to know why I was always tripping
across the threshold (the tiles there were warped). Excuses meant nothing.
Or rather, they meant I was acting the way my mother had acted whenever I asked why she had cut her hand yet again, or why she had forgotten to pick me up after science club, or why she had taken to cursing—foul, shocking oaths that even my father wouldn’t have said to a man. Always, she had excuses. And these excuses made sense. Hadn’t I believed them? And even if my own excuses were true, even if they let me reassure myself that I wasn’t sick (yet), by the time I had contrived them, my heart had lost its rhythm. Already I had made myself so hyperconscious about not dropping anything, I was sure to drop the next object I touched.
I made it to the street. I was unlocking my bike when Vic O’Connell, the biologist who ran my lab, pulled up in a taxi. Vic is very tall, with sorrowful, downcast eyes and a question-mark slouch. He’s the kind of man who thinks that if only he bows his head and shuffles, no one will figure out that he is taller and smarter than they are. He unfolded from the taxi and stood looking me up and down. “Are you leaving already?” he said. (Only a scientist would ask why someone was going home at six fifteen on a Friday night.) You could see he was disappointed. He had been in Amsterdam all week. Slung across his shoulder was the scuffed vinyl bag in which he carried his only suit. He asked if I wanted to grab dinner and talk about some probes he had brought back from the conference.
“I wish I could,” I said. And believe it or not, I did. There was nothing romantic between us. But we shared the tender appreciation that grows between any two people who care about each other’s work more than anyone else cares. Vic’s wife, Dianne, cared only about their kids. I had no boyfriend to care at all. I wanted nothing more than to sit across from Vic at Legal Sea Foods, eating a bowl of clam chili and listening to his soft, too-earnest voice discuss those probes he had brought back from Amsterdam. But my father was in town, and he had arranged another of his fundraisers at Tommie’s Pierside. How could Vic try to keep me? Money from my father’s fundraisers helped to pay his bills.
“Of course!” Vic said. “How could I forget? Look at you, all dressed up!”
I was wearing a khaki skirt and a once-white blouse that bloomed with so many chemical stains it might have been a floral print. Back then, I hardly cared about my appearance. I equated dressing up with growing old. Old enough to become my mother.
I told Vic I would stop by later and we could discuss the conference then.
He nodded. He would like that. In the meantime, I should give his best to my father. He turned and waved good-bye.
I climbed on my bike and pedaled off. I was late. I had to rush. Even when I wasn’t late, I had to rush. My mother had come down with Valentine’s when she wasn’t much older than I was now. I biked across the Charles. A pair of elegant sculls skimmed beneath the bridge. The masts of slender dinghies leaned this way, then that, like a troupe of ballerinas trailing white scarves. The State House dome shimmered on Beacon Hill. Farther west, the Citgo sign kept pointing, pointing at the sun, which was as round and red as the drop of blood on Flora Drury’s arm.
I might have stopped to watch, but one of the telltale symptoms of Valentine’s disease is the urge to stop and stare. I sped across the bridge, then darted past the cars circling the rotary at the other end. I stood on my pedals to make the hill.
“Nice ass!” a truck driver called. “Keep it moving, sweetheart!”
Boyishly small, with short hair and no hips, I rarely was the target of comments like these. I was so startled I didn’t see the car door fly open ahead of me.
I swerved just in time. If I had fallen and gotten hurt, I couldn’t have explained my injuries to my father. He hated that his daughter, a woman in her thirties, should still be riding a bike. You’re not a child, he would have said. Here, I’ll write a check. Go and buy a good used Chevy. I would have protested that I didn’t need a car. This was Boston, after all. Everyone here rode bikes, even Harvard professors with silver hair and red bow-ties. But my father was right. I liked feeling childish. A child didn’t need to confront the possibility that she might come down with Valentine’s. Or that she might marry and have a child who came down with Valentine’s. Or that she might grow too old to marry and have a child before she could figure out if she did or did not have the gene for Valentine’s. On a smooth downhill stretch, I would sometimes ride with my arms out. How could anyone whose balance was so acute and who could pedal so quickly, even uphill, let death overtake her?
Distracted, I missed the turnoff to the pier. The shops were all closed; there was no one to ask directions. I rode furiously up and down narrow one-way streets that met at odd angles. The harbor lay east, but I couldn’t get my bearings. No matter which way I turned, I saw the same open manhole, the same iron-barred jeweler’s. My mind raced around those streets, but I couldn’t seem to move. That happened all the time. I would find myself standing in the lab planning what to do next. Develop those blots. Ask Lew for more reagent. Check to see the mice haven’t eaten their babies. In my mind, I would be doing all these things at once, in ever smaller circles. That was how my mother had described her trances: I was spinning so fast, I seemed to stand still.
I pedaled down an alley and emerged on a well-lit road. Just beyond lay the harbor. A green neon fish kept flashing TOMMIE’S PIERSIDE. I told myself that even native Bostonians had trouble finding Tommie’s. The ocean breeze was chilly. I was too lightly dressed. Anyone, even a person who stood absolutely no chance of inheriting the gene for Valentine’s, would be shaking this hard.
2
Tommie’s was a tourist trap, but the tourists it trapped were far better dressed than I was. I slipped past the maître d’, who kept watch from behind a podium that had a ship’s steering wheel on the back and a bosomy figurehead of a woman nailed to the front, then ducked inside the ladies’ room, hoping to make myself more presentable. I combed my hair with my fingers, the helmet having flattened it. I wasn’t unattractive. But whenever I looked in a mirror, I saw my father’s humped nose. I was his daughter, after all. Or so the family myth had it. I was plain, clever, and ambitious, while my younger sister, Laurel, was blessed with our mother’s beauty and charm but doomed to die young.
I glanced in the mirror, then took a scallop of soap from a clamshell dish and used it to scrub the flecks of Flora’s blood from beneath my eye.
My father raised a wineglass. Then he saw me come in. “Doll!” he said. “Jane!” as if I were the object of the toast he had intended to propose all along.
My admiration for my father always overwhelmed me, it seemed so out of proportion to what a short, unsophisticated man he was. He had never gone to college. His diction was coarse. But he had used his native shrewdness to amass a small fortune—from a single army-navy warehouse in our hometown of Mule’s Neck, New York, he had built a chain of small department stores that stretched across several counties. Then, after my mother died, he had funneled every penny he had ever earned into establishing a foundation to find a cure for Valentine’s. He had browbeaten scientists into joining his cause, although most of them would have preferred working on diseases whose symptoms were clear—a lump in the breast, too much fat in the heart. Diseases that could strike a senator’s wife or a taxpayer’s child instead of those few unfortunate souls who had been born to a family with terrible genes. (Even Merriwether Valentine, who had first identified the syndrome in the mid-1800s among his patients in rural Georgia, had mistaken its cause to be vice.)
As long as my mother was well, my father hoarded. Then he hacked down the dam he had built around his money and out it all poured. He established two trust funds—one for Laurel, and one for me. How could he die knowing that his daughters might be consigned to a state institution, tied to their chairs and reeking of piss? How could he live knowing that he hadn’t done everything to find a cure for our illness? He was doing this for my sake. And for Laurel’s sake. And his own.
He stubbed out his cigar and wrapped his arm around me. “You loo
k good,” he said. “Too skinny, but good.”
I didn’t bother to thank him, any more than I had thanked him for all those other inspections I had had to endure in high school. Baby, can’t you do something with those eyebrows? What’s it called, tweeze them? You never heard of lipstick? You’d really be some dish if you’d only dress up. Later, when my mother began her decline, he grew even angrier to see me unkempt, as if her beauty were a religion whose rituals I had profaned. After she died, I got by with the barest attention to appearance hygiene would allow. But by then, my father was inspecting me less for stray hairs than for reassurance that I didn’t tremble or twitch, didn’t fall into trances or curse without cause. He reluctantly approved anything that would allow me to spend more time in the lab. If I found a cure for Valentine’s, I could get married and stay at home, primping and tweezing for the rest of my life.
I apologized for being late but told him that I’d had an experiment I needed to finish. He shrugged—this excused me, as I had been hoping it would. “Come on,” he said. “Let me introduce you.” He led me around the table. My father was a man who only felt complete leading a woman around a room, and it made me happy to think I could be that woman, although it also made me sad, knowing that he would rather have been leading my mother.
One of the few guests I already knew was Sumner Butterworth, a Harvard neurologist my father had persuaded to look for “our” gene. Sumner’s approach involved dissecting the brains of people who had been killed by Valentine’s. Although my father raved against anyone too sentimental to leave his loved one’s brain to science, I couldn’t help but wonder what he would have done if some doctor had asked permission to hack my mother’s brain from its stem and freeze it in a Ziploc bag. I respected Sumner’s work, but his methods struck me as crude. I had switched from medical school to research in the hope of finding a more elegant cure for Valentine’s. But I hadn’t had much luck, and for now, we needed Sumner.
A Perfect Life Page 1