What We Have (41 page)

 

YEARS LATER, SARA HAD THE
test done. Jenny and Rachel were old enough that she thought it would be useful for them to know the results.

She was negative.

Was she sorry she’d gone ahead and had all that surgery? No, she told me. Not for one second. Not at all. We were in Charlevoix when I asked her—a reunion of sorts, walking on our old beach, kids scattered. “You know,” she said, shrugging, “I think I would’ve wanted the surgeries no matter what.”

The test, it seems, was only part of what we needed for answers. Or maybe it’s more that
answers
were only part of what we needed. And that was lucky, because answers appeared to be few and far between.

 

OUT OF THE FIVE OF
us, three of us so far have been tested. Two negatives, one positive. Two—Julie and me—left to go.

These days, I go back and forth. Even with the surgeries behind me, I still anguish about this. If I have the test, maybe I can save Sacha and Libby some of this worry. If I’m positive, they need to know so they can move on and be smart about the choices they make. If I’m negative, they can let go of at least this particular set of fears.

On the other hand, if I find out, they’ll be forced to know. That would take away the space that for me has been soul-saving, if not life-saving—the space of not knowing for sure.

The girls are a big part of my indecision. The girls are back, but in a different position. I’m the one now, standing at the bottom of the stairs, calling up into the dim twilight of a winter’s evening.
Girls! Gir—rlllllls !

Then there’s Jacques. This is his story, too, annexed to mine through the dumb luck of a train ride, a conversation, a chance connection. A good marriage. He loves me, loves our life. He knows how I am, how anxious I get. He doesn’t want me to know whether I’m positive for this mutation or not. He doesn’t want this shadow lengthening across our lives, the lives of our daughters. Some questions, he thinks, aren’t ours to ask.

 

THERE ARE OTHER COMPONENTS. MOSTLY,
though, I think it just comes down to the dawning realization that what we know now isn’t the whole truth, any more than what we knew back when I was growing up was the whole truth. There will be more new information. Sometimes I look at the
New York Times
and shudder, thinking, is today the day I’ll open the paper up and find out there’s another component to this gene? My mother’s cousin Sherman has been fighting a rare form of pancreatic cancer for the past ten years. Could there be a connection? What if we find out other organs (pancreas, colon) are implicated? What if it never stops?

 

I GREW UP SO FEARFUL .
Anxiety of airplanes. Anxiety of interior organs. Anxiety of highways, of steep grades, of descent. Anxiety of failure. Anxiety of speaking. Anxiety of strangers. Anxiety of small, closed spaces, like elevators or caves (or spaceships). I had the surgeries. My feeling was: Do anything, but keep me from facing the knowledge I have what my mother had. What Sylvia had. I couldn’t have faced that and raised the girls. Or at least raised them the way I wanted. I wanted to be optimistic. Unafraid. To call for them in the kind of voice that reverberated with the sense I would be there when they came bounding down from whatever it was that kept them busy, free, away from me.

IN LITERARY STUDIES, WE TALK
about “passing.” Trying to pretend to be something you aren’t. Black, passing as white. Gay, passing as straight. For me, having the surgeries and refusing to have the genetic test allowed me to pass—at least until I began writing this book. For so long, I wanted to be like everyone else. So here I was, a person from a high-risk cancer family passing as “normal”—whatever I thought that meant. Very few friends or colleagues know I had surgery. I did everything I possibly could to protect myself—except to speak the truth out loud. Nobody knew: This was private. I did what I needed to do. And for a long time, that gave me just enough peace to live my life and forget.

Or almost forget. Once, several years ago, Julie had an idea. Why not go back to Rougemont and find out whether my mother’s pathology could give us the answer we needed? We could have her tissue blocks tested. That way, we could have our answer, without having to face what we were so terrified to face ourselves. It would be about my mother, then, and not about us.

It was a long, sad story. A ridiculous story, in many ways. Of course she had the mutation! Who were we kidding? But we threw ourselves into the hunt. We spent months trying to wrangle with various administrators at the hospital, who finally admitted her tissue blocks had been lost. Lost, or thrown out—probably the latter. It was like we’d tried to find the oracle, and the oracle wasn’t there.

Even worse, we’d gone back—years later, as adults—mothers ourselves—and tried to look for one last, vital thing from her—a way in which she could protect us, offer herself up in our stead. And of course, it was too late. There was literally nothing left of her. Not a single, frozen cell.

 

AS I WRITE THIS , IT’S
fifteen years later. Half a generation. In some ways, the old decision is back again. The surgeries, for me at least, are history. But what about the test? We do what we do, but then time passes. Choices don’t necessarily get made once and then go away. What made sense then, what worked for a while, doesn’t seem adequate anymore now, because I’ve moved to another place on the timeline.
The girls
are going now, but in a different way. My daughters are becoming young women. They’re growing up in a world dazzlingly different from the one in which I grew up—and for the most part, they’re facing it open, honest, unafraid.

We’re struggling, Jacques and I, with a question that needs to become part of a larger debate. There is no simple, right or wrong answer. What, after all, would I do with the information if I get it? When is the right time to tell the girls what I learn? What will they do? Two daughters, two possible answers. What difference will it make to each of them? To the two of them together? Finally, these are choices that have to be made—slowly, thoughtfully—one by one. The information we get will change over time, and the decisions will, too. What we’ll know in ten years will be different from what we know now. And so it goes.

At times, I beat myself up for having been so fearful for so long. At other times I look at the girls and think, maybe they are who they are in part because I raised them without knowing for sure. Maybe I’ve given them that, at least—the space to grow up without fear.

I’m not sure. We do what we do, and let the rest go.

Or do we? Do we ever let go of the past?

I started writing this book because I wanted to understand why my family made the choices we’ve made about testing and surgery. How we’ve lived with and understood risk. But along the way, I discovered that wasn’t all of it.

I wasn’t just writing about my family history. I was trying to get that history back.

Once, when Libby was almost three, a friend, Lee, came over for dinner with her six-year-old son. She’d been a roommate of mine when I lived in New York City one year, between bouts of grad school. I wanted to show Libby her picture, and I found a small album from the party Lee had given for me before Jacques and I got married.

Libby loved looking through the pictures. There I was, modeling an eyelet nightgown over my clothes. Holding up a china platter. Years younger, lighter in expression, playing bride-to-be.

“Look,” I said, stopping at the last picture in the book. Julie and my mother and I, out on Julie and Jon’s deck in northern Virginia. It was a close-up, and it was clear all three of us had drunk more than our share of the sangria. Julie was on one side, I was on the other, both of us with our arms around my mother. All three of us soused and happy. Our mouths open, heads back, laughing our heads off.

“Who that?” Libby asked, putting one moist finger on my mother’s face.

I tried to sound matter-of-fact. We still rehearsed sometimes from Sacha’s tattered alphabet book, but years had passed. Kids forget. Like the black-and-white photos hanging in the hallway, I thought. My parents’ persistent attempts to keep Sylvia alive for us.

Libby was puzzling over my mother’s face, her eyes clouded.

I didn’t want her to see how much this hurt.

“That,” I said brightly, “is Mommy’s mommy.”

Libby seemed to mull this over. “I like Mommy’s
daddy
,” she said after a while, as if making a peace offering. “He nice.”

I nodded. “Yes,” I said, still trying. “He’s very nice. But, Libs, Mommy’s mommy—Bomma—
she
was really nice, too.”

She looked at me, skeptical.

I leaned closer to the picture. “I miss her,” I said, as cheerfully as I could. “You know what?” Libby’s favorite phrase that year. Her version: “You—what?”

“What?” she said back, interested.

“I’m going to give her a little kiss,” I said, and I leaned over and kissed my mother’s celluloid, rosy cheek.

Libby watched me, considering. She studied my mother’s picture.

“She not talking,” she said. And broke my heart.

AN EARLY MODERNIST I ADMIRE ,
Stephen Greenblatt, wrote in the introduction to one of his books on Shakespeare that he had begun his study “with the desire to speak with the dead.” To some extent, he wrote, that’s why we study history. To make the dead speak in us.

I don’t know what my mother would say if she could sit down with us now, with Sara, Julie, and me. If we could have her back for a day. One day: sunlit, luminous. Or even one hour.

Maybe it’s summer. Charlevoix. All the beach toys gone now, the kids are grown, Jenny is in a doctoral program, engaged now. Rachel is in the Ukraine with the Peace Corps. Sacha and Maddy are applying to college, Ben and Libby are both in high school. What would she say about any of this? That a test, in the end, is only a test? That the answers we think we’re looking for are only part of what matters most?

They took their treasures with them
, the Egyptians, she might say, shading her eyes against the sun.
They loaded their boats with what they’d gathered, and they set off
.

There’s no way of knowing. Because, as Libby grasped when she was not quite three, my mother—she’s not talking.

And even if she were, even if we had our answer, whatever it was, what would we do with it? How would we fit it into the shaped poem we try to assemble of our lives?

Would we see an hourglass, or wings?

WRITING A MEMOIR MAKES YOU
think—and thank—in layers. This book has benefited from the generosity and support of a number of people. My colleagues Elizabeth Graver and Suzanne Matson have guided this endeavor at many stages, and it’s no overstatement to say this wouldn’t be a book without their help and advice. Richard Parks took on the project at a particularly difficult time in the book industry, nurturing it (and me) with encouragement, sagacity, and insight. From our first conversation, my editor, Rachel Holtzman, has been a kindred spirit, a wonderful reader, and a great source of counsel. I’ve been lucky for her guidance.

Before the book came the medical history that inspired it. Many doctors have helped my family navigate our way since the research on hereditary breast and ovarian cancers first came to light in the early 1980s. While we have benefited directly from some of the best clinicians in the field, we’ve also been helped indirectly by others who have dedicated their careers to learning more about BRCA1 and BRCA2. Research done at Creighton University and at the Gilda Radner Hereditary Cancer Detection Program has been particularly important for my family. Closer to home, special thanks go to Dr. Judy Garber, and to my surgeons, Dr. Gadd and Dr. Muto, for helping me to make difficult and complicated choices. Each of these fine doctors has found ways to integrate humanity into their science, and I admire them for it. I deeply appreciate Sue Friedman’s work at FORCE, a nonprofit organization dedicated to educating and supporting women at risk for hereditary breast and ovarian cancers. Women (and men) with dispositions for these diseases will find the world of high-risk cancer a much less lonely place thanks to the community FORCE provides.