It was like her mother had said on the day before the wedding, when she'd pulled Ellen away from the last-minute preparations and taken her for a final prenuptial mother-daughter walk.
"Darling," she'd said. "I know we haven't always seen eye to eye. You don't always approve of how I handle things. We've had our differences."
Ellen had started to reply. Wasn't it the reverse, her mother who didn't approve? And did they have to talk about this now?
"Please. Let me finish. It's not my business to judge you. It's my business to love you, and I do. I think you've made a spectacular choice. I wish you every happiness. Not that you need anyone's wish: it's there for you, I see it ahead for many years."
Ellen felt the same, but she was curious. "Why do you say that? How do you know?"
"It's written all over your face. And all over his. It's in the air whenever you're together."
Ellen had blushed. This was the mother she loved.
"I'm so happy, Mom. I feel so lucky."
"I'm happy, too. Luck is a wonderful thing. But it's not all luck, sweetheart. You had something to do with it. You picked a good one."
A good one. Yes. She had. It was true. Everett was a good man, and she knew he would not leave her for anything. Not for love or for money, and not if she had her breasts removed.
He did love her breasts…he was a man, after all. He loved the shape of her body, and her breasts were a part of that shape. He loved to touch them, hold them in his hands, press his face against them, smother them with kisses.
Sometimes she felt self-conscious about them…she was a woman, after all, and had her moments of wondering if they were too big or too small, if the circles around the nipples were too dark, if the nipples themselves looked right. But on the whole she liked her breasts, too. She liked her body, and she was happy that Everett liked it, and she loved the sensation of her nipples being caressed and kissed and the sharp line of pleasure this sent from breast to womb.
That said, in no way did their relationship depend on them. If her breasts were gone, she would adjust, and Everett would, too. In sickness and in health, he had vowed, and he was a man who took his vows seriously.
The ovaries and uterus, on the other hand…a slightly bigger deal. Everett would say the same thing. Do it. Have them removed. He would not hesitate. In the future no word of regret would ever cross his lips. He would hide his disappointment, wall it off, from her and perhaps from himself as well. Your life is more important, he would say, than our having kids. And he'd mean it. Of course he would.
But for her, not so simple. Not simple at all. She would always know what she had failed to produce. There would be a hole in her life, and this would be a source of immeasurable sorrow. There would be a shadow over their marriage, an absence that she could not begin to think of how to fill.
Having kids was etched so deeply in her. It had been there, inside, for as long as she could remember, inseparable from who she was. Womanhood meant many things, and one of them was motherhood. This seemed only natural. Most of her friends, both married and unmarried, felt the same. Getting pregnant, giving birth, raising a family: let the wild rumpus begin! It was nature's gift and plan.
You could live without breasts. But without kids? Without ovaries and a uterus? This felt unnecessarily cruel, and she would not do it. She could not. The ovaries and uterus were hers and would stay. She would not part with them, and furthermore, she would not put herself in a position where she would have to consider parting with them. In other words, she would not do the test to see if she had that awful gene, the one her grandmother and her mother had. That one, or any of the others that interacted with it, the so-called constellation that put her at such grave risk. For if she had it, she wouldn't be able to ignore it. She wouldn't be allowed to. Everett wouldn't let her. Her mother wouldn't let her. The two of them would keep at her to do something about it, in all the ways that loved ones exerted their love.
She preferred to remain ignorant for the time being.
Among her friends, nearly all of whom had been fully genotyped, this bordered on the heretical. You got a wax, a pedicure, you kept in shape, you kept in touch, you had your genome done. These were not the days of being uninformed. They were the days of knowing absolutely everything you could: about yourself, your friends, your friends' friends, the world around you. Refuse data? Deny it either going out or coming in? Keep your own counsel? You might as well pack your bags and go live in a cave.
True, your genome was yours in a sense—a certain narrow, private, misanthropic, self-centered sense—but in a larger, fuller, more generous sense—a global sense, if you will—it was everyone's. Your genome was part of the great world-wide human pool, and in this sense was public domain. Friends deserved to know who they were friends with. They deserved to know what their friends were made of—what, building-block-wise, they had inside, what this might lead to, and what their pedigree was. You might discover you shared a friend's single nucleotide polymorphism, her SNP, and how cool would that be! You might even be related. Maybe your ancestors hunted together on the steppes of Mongolia. Maybe they shared a yurt and snuggled under the very same reindeer hide.
This was information that people who cared about people should know.
Ellen heard from more friends than she knew she had, sharing their experiences and concerns, and urging her to get profiled. She received links to one site after another, until she cried, Enough! Give it a rest. But the sites continued to find their way onto her screen. Forty and Six announced monthly specials. Our Chromosomes, Ourselves offered two-for-ones, and Genomania promised a free sequencing in exchange for the names of five or more friends who'd be interested in their services.
No thank you, she said to the screen, hitting delete. No thank you, unsubscribing. No thank you, no thank you, leave me alone. Go away. I don't want your stupid test. I'll do it AK, after kids.
Her mother pleaded with her not to wait that long. Getting pregnant could trigger the cancer. It was a big risk.
"You waited," Ellen reminded her.
"I don't have the full constellation. I just have the one bad gene. Besides, they didn't have the test when I was your age. They didn't have the technology."
"Would you have done it if they did?"
"Absolutely."
It was a bald-faced, if forgivable, lie.
"I don't want to know something I'm not going to do anything about," Ellen replied. "It'll just worry me."
"It doesn't worry you now? It worries me."
"Not as much as if I knew it for a fact. Then it would be like the cancer was already there. Already growing inside of me."
What her mother wanted to say was, "maybe it is." But she couldn't be that cold, not even in the name of love, so she held her tongue. It would be like placing a curse on her daughter, and she knew how it felt to be cursed. She'd had cancer in both breasts, and had had both breasts removed, along with the plumbing down below. It had been an awful experience, and that was before the complications. She had never fully recovered. The best thing she could say about the multiple surgeries was that she would never have to have them again.
Now the cancer was back, in one of her lungs.
She hadn't yet told her daughter. How could she? What would she say? She hoped if she waited long enough, she wouldn't have to say anything. She'd be hit by a car and die a quick and sudden death. Or die in her sleep, even better. Better still, the cancer would disappear. Her body would fight it off, or it would somehow self-destruct. A hari-kari, suicidal cancer…it could happen. She'd read accounts. It could shrivel up like a pea and leave her in peace. Being a peace-loving woman, she spent a fair amount of time every day visualizing this outcome.
She also spoke to it at times, as she might to a disobedient child, or an alien, or an enemy. She tried to reason with it, negotiate, court its favor, compromise. So far it wasn't listening. It continued to grow and divide. Her visualizations and conversations didn't seem to be working. The drugs were
n't working either. At a certain point she felt she had no choice but to tell her daughter.
She did it over coffee at Ellen and Everett's apartment. Everett was working in the back.
Ellen was stunned. She shook her head, as if it couldn't be true.
When she recovered her voice, she got angry, as her mother had suspected she might. She didn't like being kept in the dark, especially about something like this. She didn't understand why her mother insisted on being so secretive.
But the anger didn't last. Soon it was swept away by a river of tears. When Everett finally wandered out to say hello, the two of them were locked in a fierce embrace.
He was next to get the news. It was not a happy moment. The three of them talked for a while, then Mom drove herself home.
The apartment seemed to shrink in her absence. The air felt heavy. The walls pressed in. Ellen had to get out, and she and Everett took a walk. The streets were crowded. The sun was warm. The city was alive all around. Ellen felt this life acutely, almost painfully, and when they got back home, she asked Everett to make love to her.
She tended to be a vocal lover. Restraint was not her m.o., not, as it were, in her genes. She loved to make noise, to moan and groan and even cry out. This time, as she reached her climax, the cry was different, harsher, as if something was being torn from her. Afterward, she continued to cry, and Everett held her, until at length she quieted.
Later, curled in the warmth of his arms, she announced that she'd decided to have the test done. She would get her genome sequenced, A to Z.
"I'm glad," he said.
"Will you be glad when I have no breasts? When I can't have kids? Because once I do this, and I find out I have those stupid genes, I'm not going to stop. I'm going to do what I have to. If that means letting them rip me apart, I will. I refuse to stick my head in the sand like my mother did."
"They're not going to rip you apart," he said.
"They'll take away some very precious items."
"They won't take you."
"Are you ready for a life without kids?"
He hesitated for less than a second. Would it have mattered if he hadn't? If he'd answered immediately?
"We'll work it out," he said.
Our dream will die, she thought. "I want you to know where I stand."
Showing him how tough she could be when she made up her mind. Warning him. Was she also, he wondered, asking him to take issue with her? Fight her on this? Say no, don't do it?
"Why do you say your mother stuck her head in the sand?" he asked. "She didn't know she was at risk until she was first diagnosed."
"She didn't want to know. Her mother had cancer. And there was a test for it years ago. Not like we have now, but it was something. She just refused to have it done."
This was news to Everett. It put a whole new spin on Ellen's own refusal. Like maybe it was some weird kind of loyalty thing to her mom. He didn't understand it, but he didn't have to.
"I'll love you always," he said. "No matter what. They can rip everything apart, till there's nothing left, and I'll love that."
"Don't be morbid."
"I'm just saying."
"I know. And thank you. I'll remind you later you said that."
He kissed her on the ear, then the neck. "You won't have to remind me. I won't forget."
She swallowed a lump in her throat.
He kissed her breast.
She felt a tingle, a stirring, in her belly.
"Again?" he asked.
They did it again and afterward conked out. Everett woke midway through the night. Ellen was turned away from him, her arms clutched tightly across her chest, crying softly in her sleep. It pained him deeply, and he wrapped his arms around her, hugging and holding her from behind, until eventually her sobbing ceased. The next morning he rose early and closeted himself in the study. By the time Ellen was up, showered, and dressed, he had what he wanted and had uploaded it to his pad. He brought it to Ellen, who put her own pad down and looked at his.
"I found this yesterday," he told her.
"Twenty-Two and You?"
"It's a start-up. They're, like, an hour away."
She scanned the page.
"You believe this?" she asked.
"I don't disbelieve it."
"It seems like a joke."
"What? Gene therapy? Hardly."
" This therapy. They claim they can rewrite any gene you have. You'd think something like that would be in the news."
"It was in the news. It is. But they're new. They don't have much of a track record. It's an evolving story."
Evolving? she thought. Try outrageous. Still, it was something. Maybe. But first things first.
They ordered the genome kit that same morning. Like an arrow waiting to be launched, it came the very next day. Ellen unwrapped the package with some excitement, which surprised her. She worked up a nice glob of spit, full, she hoped, of cheek cells, emptied it into the vial, sealed the vial, and sent it off. Six weeks later the results arrived online.
Earlier that week, she'd gotten a call from her mother. These were calls that she dreaded, but this time the news was good. Amazingly so. The cancer was in retreat. It was shrinking. Who knew why? A delayed effect of the drugs? The visualization? Both? Neither?
"It's a reprieve," said her mother cautiously.
Ellen was thinking more along the lines of a miracle. But either would do. She wasn't going to quibble. She felt like shouting for joy.
The news carried her until the day her own results arrived. Let there be a miracle now, she thought, staring at the company's screen before logging on, heart pounding, hope battling dread.
This is what she found out:
1. She had a low risk for diabetes.
2. She carried something called rs 1805007, which explained her strawberry-blonde hair.
3. She was hypersensitive to a drug used to thin the blood.
4. Her ancestors roamed the forests of Eastern Europe. They had interbred with tribes to the south. They had also interbred with Neanderthals.
5. She had sticky earwax. This she already knew. Now, though, she no longer had to feel guilty when her ears got clogged. It wasn't her fault. It was in her genes.
6. She carried the Triggering Endocrine Stutter Sequence gene, TESS 233, the one her mother had, but with a twist. She had another gene, probably from her father. A hormone-sensitive promoter gene. It was part of the constellation they had feared. Were she to get pregnant, her chance of getting cancer of the breast and ovary was near certain.
TWENTY-TWO AND YOU, the company Everett had found, was named after the number of chromosome pairs minus one, the one, according to their upbeat, breezy website, being You. You were the wild card. You were the one in charge, who decided what needed to change. You were the supplier of that critical information, the orchestrator of your personal future, the Author with a capital A of your own destiny. This was their guarantee. Their promise: to unzip, repair, and rezip whatever gene needed fixing, then send you on your way. Their motto: Put the ever-after forever-after in your hands.
The company was housed in a spanking new box off the freeway. Ellen and Everett visited it the week after she got her test results. Their appointment was the last of the day.
It had not been the best week of her life. She'd had nightmares every night, terrible things fraught with images of disfigurement and loss. More than once she woke like a bolt in the darkness, drenched in sweat and gasping for air. Her waking hours were hardly better. She hated what was inside of her. She dreaded what lay ahead. Everett had high hopes about this company, but that was Everett. She did not share his optimism. The whole thing seemed too good to be true. Too simple. Too easy. How could they perform these miracles? The answer: they couldn't. It was hype. In the end she would have the surgeries and be a husk of a woman, a non-woman, for what remained of her sad, barren life.
The reception room was full. Men, women, and children of every age. Her eyes glided over the men,
lingering on the women and most especially the children. Such beautiful things. What, she wondered, had brought them? What terrible condition did they have? How thin the line between a normal life and this. She felt a wave of tenderness and sadness for them. She felt pity too, for them and for herself.
By ones and twos and threes the room emptied, until they were the only ones left. It was five o'clock, an hour later than their scheduled appointment. Everett was restless and annoyed; Ellen, surprisingly blasé. The world of cancer was not the same as the rest of the world. She had learned this with her mother. It had its own set of rules, its own pace, and its own clock. You couldn't get worked up about these differences. It was humiliating enough simply to have the disease.
"You don't have the disease," Everett reminded her, not for the first time. "You have a chance for the disease. That's why we're here. To remove that chance. Reverse the odds."
She imagined someone tossing a pair of dice, which seemed an iffy way to decide one's future. She knew it was irrational thinking. This was science, not a crapshoot. Science and Everett, her soul mate, her heartthrob, her love. Everett, trying to raise her spirits; Everett, caring for her; Everett, keeping the flame of hope alive.
She owed him, if not cheer, then at least a measure of kindness.
"You're right," she said, lacing her fingers through his. "I'm sorry for being such a bitch."
"You have every reason. And besides, you're not."
"You lie."
"I never lie," he said, squeezing her hand.
His wedding ring pressed against the inside of her little finger. From the finger to her heart. From her heart back to his. The true ring.
A nurse came out and called her name, breaking the reverie. They followed her through a door, where they were placed in another, smaller room. They waited longer, and eventually a man appeared. He was tall and broad-shouldered. He had slate-blue eyes and a sweep of lank, wheat-colored hair that all but covered his forehead. His nose was large, his cheeks wide, his lips a boisterous red. His name was Rudolf Stanović. Dr. Rudolf Stanović. He had trained jointly as a researcher and a clinician, had spent time at the bench but now worked solely as a practitioner. He treated patients, and this was work he loved.
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