The Law of Bound Hearts Page 5

  Richard was charmed, especially when Carlotta mentioned that she had heard him play two years before. A violin and cello concerto with the Chicago Symphony. She was on the CSO board of directors, she told him. Then she looked at Libby.

  “There’s no easy way to say this,” she said. “Your kidneys are failing.”

  “Okay. That’s what we do know.” Libby tried to soften her rudeness, only an attempt to gain control, with a vestigial smile. But she hadn’t known that. Not really. She had been hoping that the new test results would prove otherwise. She had hoped that the changes she’d made recently were all that was needed. (She’d eliminated salt, every speck; she’d meditated, for God’s sake.)

  “We’ll need more tests,” Carlotta said. “And a biopsy. We’ll talk about treatment when we get the results.” She left the room and was gone for several minutes.

  “What a coincidence,” Richard said as soon as she disappeared.

  “What?”

  “Her being on the CSO board, hearing me play.”

  “Yes,” Libby said, her jaw so tight it ached. “How lovely for you.”

  “I’m only saying she seems nice.”

  Libby didn’t want nice. She wanted professional. She wanted someone to cure her.

  Carlotta returned with a folder, which she handed to Libby. “I’ve put everything in here,” she said. “You’ve got an appointment tomorrow for the biopsy and I’ve set up a time to see you next week. By then we’ll have a clearer idea of our protocol.”

  The days passed slowly. Libby slept late, moved cautiously, stopped having wine with dinner. When she returned for the next appointment, she had lost three pounds.

  It wasn’t lupus or HIV or hepatitis.

  “You have a disease called focal sclerosing glomerulonephritis,” Carlotta told her. “FSGS for short.”

  Richard asked her to repeat it, to spell it for him. He wrote it down carefully, parroted back the spelling to ensure he had it right.

  “We usually find it in African American patients,” Carlotta continued, “but certainly not limited to them. Caucasians can contract it, as well.”

  “How long have I had it?”

  “That’s impossible to say. People can have the symptoms for years and years and not know. The first symptoms you would notice were exactly what you experienced: swelling in the legs, puffiness in the face and hands, foamy urine.”

  “How did I get it?” Libby thought of the traveling she and Richard had done. The trip to Guatemala to see the ruins at Tikal. Snorkeling in Belize. The Yucatán. She was meticulous about what they ate and drank on these trips, even insisting they brush their teeth with bottled water, no matter what reassurances the hotel gave. She had always been so careful of everything. She had tried to do everything right.

  “There are three ways we get diseases,” Carlotta said. “Bad habits, bad genes, and bad luck. With FSGS it’s purely a case of bad luck.”

  All that care and it came down to luck.

  “What’s the long-term prognosis?” Richard asked.

  “FSGS is chronic, not acute.”

  Hope warmed Libby’s chest. “Acute” sounded serious, the word itself sharp as a knife. “Chronic” sounded like something she could deal with. Something pesky like a sinus infection or strep throat, something cured with a double course of antibiotics, but certainly not anything life-threatening. Not cancer.

  “Which means?” Richard said.

  Carlotta was straightforward. “Which means we can’t reverse it. There are treatments, but there is no cure.”

  Hope cooled and fell away. She had it wrong. “Acute,” the sharp-edged word, was the more benign. “Chronic” was the one she had to fear. Later, she realized that was the moment everything changed. The Before-and-After moment. The plane-crash moment. The dividing line between the ordinary—the blessedly ordinary life in which all the minute and unconscious workings of the body flexed and pulsed and flowed on—and the perilous extraordinary, when nothing could be taken for granted ever again.

  Richard reached for her hand, squeezed it, but she was unable to respond. She felt brittle, betrayed.

  “What do we do?” he asked.

  “We start with medications—drugs to get your numbers lowered.” Carlotta spoke at length about chemistry levels and numbers— creatinine, BUN, blood pressure, protein—and what they signified. Libby’s hand lay lifeless in Richard’s.

  “Long-term?” he said.

  “Long-term we are looking at more dramatic treatments. Once we reach end-stage renal disease, which is without doubt where we are heading, we’ll be looking at treatments to replace lost kidney function. Almost certainly hemodialysis.”

  “Dialysis?” Libby said. Just the thought made her nauseous. Hooked up to machines for hours. She couldn’t do it.

  “How soon?” Richard asked.

  “Hard to say. Anywhere from a year to five.” She turned to Libby. “A lot depends on how you respond to medication. But let’s not get ahead of ourselves. That’s a way off.”

  She went over the treatment plan. Control the swelling and high blood pressure with prednisone, minimal dosage. Control the edema with diuretics. Careful diet. No salt. Less protein. Erythropoietin injections to stimulate red blood cell production.

  We’ll beat this, Richard said to her as they drove home. He went back to the computer, checked Web sites, printed out pages of information. He located numbers for support groups and brought home books that she couldn’t bring herself to read. She still wouldn’t allow him to tell the twins. “Why worry them needlessly,” she said.

  The year passed in a seesaw of hope and discouragement, all predicated on test results, the creatinine numbers and protein levels that rose and fell. Finally, over spring break, she’d told the twins. A pesky health problem, she said, making it sound like a minor imbalance, something easily cured with drugs. She didn’t want them worried.

  At her last appointment—she’d assumed it would be a routine checking of her numbers—she was stupefied when Carlotta told her she would have to begin dialysis.

  “Let me think about it,” Libby said. She was not ready for this.

  “It’s not an option,” Carlotta said. “You’re in end-stage.”

  “You said five years.” Rage overtook her.

  “One to five. No promises.” Carlotta reached for Libby’s hands. “I know it sounds scary. It’s the unknown. The thing to keep in mind is that most people on dialysis start to feel better almost immediately.”

  Is that a promise? she wanted to ask.

  “I’ll make the arrangements,” Carlotta continued. “We’ll set you up at the clinic for three times a week, either Monday, Wednesday, and Friday or Tuesday, Thursday, and Saturday, depending on what works best for you. You’ll need to plan on four hours each day.”

  “Four hours?”

  “Books or knitting help pass the time. Some patients have found it helpful to talk to someone who is actually undergoing treatment before they begin,” she said. “Would you like me to get you a few names?” Libby did not.

  Carlotta explained that Libby would need to see a vascular surgeon for the creation of an arteriovenous fistula in her left arm. She gave her a leaflet that detailed this procedure, how it would establish a connection between an artery and a vein in her wrist through which blood would leave and return to her body during dialysis. And she also would need to have a temporary catheter implanted in the subclavian vein, below her collarbone.

  “Why?”

  “For access until the shunt is properly healed and ready for use.”

  Shunt. Catheter. Fistula. Just the words made her feel queasy.

  “Kidney patients live long, full lives on dialysis,” Carlotta went on, “but I want you to be considering other treatment options, too.”

  “Like what?”

  “Transplantation. The ideal situation is a living donor. There is less chance of rejection than with a cadaver donor.”

  Cadaver donor. For a moment she fe
ared she would faint.

  “Think about family and friends who might consider it. Your husband might want to be tested to see if he’s a match. Do you have siblings?”

  Libby paused. Sam, she thought. “One,” she said, glad Richard wasn’t there to contradict her. “A brother.”

  “You’ll want to contact him. Let him start thinking about it. Getting things in place. Pretests for compatibility. How old is he?”

  “Forty-eight.”

  “Not a twin, huh?” Carlotta had said. “A twin would have been perfect.”

  A breeze had come up. It rippled over the grasses, caused the spider-web to sway, chilled Libby. She rose from the bench and headed back toward the car. Her legs ached and she was out of breath by the time she reached the parking lot. She hated this, the betrayal of her body. She ran a finger over her breast, felt the hump of the catheter. She tried to imagine what it might feel like to have part of another person’s body—another’s organ—inside her. The thought made her slightly ill.

  A twin would have been perfect. A memory splintered in. Her mother used to call her and Sam the Siamese twins. They were inseparable. Once.

  Sam, she thought.

  She felt numb with regret and sorrow and loss.

  Sam

  Are you ready?

  They sit on the chaise, legs trussed at thigh, knee, and calf by three of their mother’s square floral scarves. Are you ready? At this signal, they stand in unison, wobbling for a moment until Libby curls her arm around Sam and steadies them both. They are playing Siamese twins, a game they made up after they had seen a picture of conjoined brothers. They discovered the photo one day when they were playing in the basement, leafing through the pages of a musty Life magazine and clipping pictures to furnish homes for their paper dolls. Refrigerators and stoves, couches and tables. Plates of food. Boxes of Band-Aids. The photograph of the twins, fused at the chest, stopped them short. Sam ran her fingers over the picture, stared at the brothers, while Libby read the text aloud: Their names were Chang and Eng; they were from Siam; such twins occurred only once in fifty thousand to eighty thousand births. The brothers stared straight out at the viewer, their expressions as happy as those of Sam and Libby in the picture right upstairs on the mantel in the living room, the one taken last Easter at their grandparents’.

  They have picked names for themselves: Missy (Libby) and Sissy (Sam). When they are playing this game, they refuse to answer their mother if she doesn’t use these names. They love imagining themselves connected, actually yoked by a band of flesh. In the game, they picture a future with them bound together in this way. Sometimes they decide they will be famous—singers or actors or scientists—and other times they determine they will marry. To twin brothers, they decide. They will have a double wedding. (Missy read in the article that Chang and Eng had both been married.) Naturally they will live in the same house. They will take turns choosing their clothes each day. They will never allow anyone to separate them even though Missy has informed Sissy that sometimes an operation can be performed to sever Siamese twins.

  All afternoon they walk as if actually connected at the leg. They like the idea of being connected forever. Even at ten, Sam cannot picture a future without Libby at her side. She is pleased when strangers comment on how alike they look, say how if it weren’t for their heights it would be nearly impossible to tell them apart. Sam likes seeing them as mirror images and sees any difference— even of height—as a betrayal. They insist on eating dinner tied together, although this annoys their mother, who thinks they take the game too far. At bedtime she puts her foot down, and in the sharp-edged voice they know better than to defy, she demands that they remove the scarves.

  Later, as Sam brushes her teeth, she feels off balance, as if a part of her is lost. They were together and then they weren’t. When she puts on her pajamas, Sam sees that the skin on her calf is still crimson and sweaty from where it had been pressed against Libby’s. In bed, without Libby next to her, Sam has trouble falling asleep; after a while she rises and crosses to her sister. Although Libby’s bed is narrow—a twin—she does not complain when Sam climbs in with her. They nestle, spoon fashion, and, with the touch of Libby’s breath wisping against her neck, Sam feels complete again.

  Many years later Sam would read a phrase in a novel that encapsulated how she had felt when she and Libby were playing their game of Siamese twins. The Law of Bound Hearts: Separate them and only one—at most—would survive.

  Sam woke in the dark and reached out for the figure beside her. Caught in that groggy moment of half sleep when a dream can still seem real, she believed for a moment that it was Libby she was reaching toward, that they were again in their childhood home, sleeping in Libby’s bed. She knew, in those brief seconds, a thrill of joy, of all being right; then her hand registered the contour of Lee’s shoulder, the bulk of his muscles, and the spasm of joy evaporated. Tears suddenly rose and caught in her throat and she swallowed against the burn of them. She would not cry. She was done with crying. She’d done her share of that; what was past was past.

  Except, the past wasn’t something you could simply close your eyes and wish away. It refused to stay buried. It was always, inescapably, irrevocably a part of the present, an accumulation of decisions and actions and choices, each bearing its own consequences. She knew this, Lord knows, she knew this, had known it even when she moved to Mattapoisett and then to Sippican and began with fierce determination to build anew. Yet all the days she had spent working toward a future, some part of her had been waiting for the past to come knocking at her door; all that time, she had been waiting for word from Libby, knowing that sooner or later it would come. She had known this but still she had been caught unprepared.

  She had to pee—all that beer—and her mouth was parched, the first sign of the hangover she would have in the morning. The bedside clock said it was eleven. They’d been in bed barely an hour. Lee slept soundly. In the darkened room, she made out the length of him beneath the covers. Oblongs of fractured moonlight fell through the window blinds, striping his body.

  Eventually she would have to tell him about Libby. She wondered if he would understand. How vulnerable love was, she thought, how little it took to damage it. She knew that now. Once, she believed that the love she had for Libby would withstand anything. She could never have imagined it would turn into this loop of love and hatred.

  When she was in grade school she would listen to her classmates talk of how their older sisters were mean to them, and she would hold proudly and possessively to the preciousness of Libby’s love for her. How was it possible that out of such love could come rivalry and hate? Or had she been mistaken? All those years, had she just been a tedious responsibility for Libby? While Sam had believed her fierce love returned in equal measure, had Libby been resentful, annoyed at always having a younger sister tagging along, complaining to her classmates about her sister, the pest? Had what Sam seen as joyful been a burden to Libby? Had Sam been blind to it, seeing only what she wanted to see? Was that the explanation, then? All those years, Libby had been harboring a resentment that festered and rankled until it mushroomed into betrayal. All those years Libby had resented the closeness. Fearing what? That she would be consumed? Well, in the end it was Libby who had devoured Sam.

  She slipped out of bed and went downstairs. In the kitchen, air still sweet with the scent of chocolate, she negotiated her way to the sink using only the glow from a small night-light plugged in over the desk. She ran the tap until the water was cold, then drank, assuaging thirst. She swallowed two aspirins—an attempt to derail the morning’s hangover—and drank again.

  Please, Libby had said. Her independent and stubborn sister, who seldom asked anyone for anything, must need her. In spite of herself, Sam couldn’t hold back the glow this knowledge brought. What could have led Libby to break six years of silence? Sam tried to recall the exact tone of Libby’s voice, the exact words. There hadn’t been panic or shock, no urgency, unlike the call informi
ng her of the plane crash that had killed their parents. If it was something about one of the twins, Libby would have mentioned it. Sam was certain of that. Why had she been so cryptic? Why hadn’t she said more? Now Sam regretted erasing the message. She wanted to hear Libby’s voice again. A wave of longing, kept at bay for years, washed over her.

  She checked the clock again. A little after eleven. Ten in the Central Time zone. Not too late. She crossed to the phone, picked up the receiver. Even after all this time, she knew the number by heart. She stood, receiver in hand, for several long minutes before replacing it. In the end, pride—or stubbornness—was stronger than desire.

  All possibility of sleep gone, she flicked on the overhead light and started a pot of coffee. At the desk, she took up her sketchbook. She flipped to her preliminary drawing for the Chaney wedding. Both bride and groom were architects and Sam had chosen vertical stripes for the cake. In hyacinth and apple green, edged with silver. The stripes would be sharp and stylish, confident—architectural— but softened by an overlay of curlicues and sugar-paste tassels. Yesterday she had been pleased with the design, but now, as she considered it, she frowned, dissatisfied. Perhaps something more baroque, each layer a different design. She stared up at the bulletin board over her workstation; on it were dozens of photographs showing couples posed by cakes four and five tiers tall, preparing for the ritual of the cutting.

  There were so many traditions surrounding the wedding cake. According to her research, the bride and groom fed each other cake as a symbol of how they would care for and nurture each other throughout their new life together. Originally, she’d learned, small cakes were piled, one on top of the other, as high as possible, and then the newlywed couple kissed over the tower of cakes, trying not to knock them down. If they succeeded, it meant a lifetime of prosperity. So many traditions designed to ward off the perils of life.