Breakable You (9 page)

She had him in her mouth, and he was leaning against the tree, and he was shuddering, he was working his fingers through her hair with a gentleness that surprised her, and she still didn't even know if she even
liked
him, but here she was, taking him in a shady part of Central Park. It was as if the two of them had connected, from the first, on a pre-rational plane; it had been obvious from the first that something in each of them craved something in the other. She had a feeling of mystical tightness—she remembered Plato's notion that each of us has an other half, whom we search for during all our earthly days—and she knew that she was giving him as much pleasure as he could stand.

Maud Weller, pleasure artist.

But when she looked up at his face, she saw that she'd perhaps misperceived the situation, because even though his cock was hard in her mouth and he seemed, down here, to be feeling as good as a man could feel, his eyes were wide open, and he was crying.

She took her mouth away, which was what he wanted her to do, which was what he didn't want her to do. One or the other, but he wasn't sure which.

She brushed her hair away from her eyes and sat back against a tree. She was smiling at him: kindly, puzzled, sympathetic.

"Are you okay?" she said.

He zipped and buttoned and sat down next to her and took her hand.

"I guess I should tell you a couple of things," he said.

"I'd like it if you would."

"I told you I used to be married."

She nodded.

"We had a daughter. She was born with a blood disease. She died when she was three years old."

"I'm so sorry," Maud said.

She looked sincere. Samir could always tell whether expressions of sympathy were genuine or not. Experience had turned him into a lie detector of condolences.

"Let's walk," he said. He gave her his hand and they started back out of the tangled shelter of trees.

Back in the brightness of the park, life was continuing. Families, runners, bicycle riders, friends out for a walk. The beauty of the human body. He felt very tired.

"Do you want to tell me more about it? I want to know, if it's okay for you to talk." She said this in a small voice that he didn't like. Hushed and trembling with concern. A social worker's voice, he thought.

He was aware that he was being ungenerous to her. Even if her voice was a little phony, she was being phony in a good cause. She was trying to show him that she was interested.

He wasn't sure what else he should tell her. The problem was that if he started to talk about it, he might never stop.

He had met Leila just after college, and they were married in their mid-twenties. Within a year of their marriage, Leila had given birth to a girl.

In the cab, on the way to the hospital, Leila had said, "It's like stepping into eternity." He knew what she meant. He felt as if they were taking their place in an endless procession, a procession extending from the darkness of the past to the darkness of the future.

At the hospital, Leila in her labor was out of her mind with pain, but she refused to take anything to make it easier. Standing next to her, holding her hand, he cried uncontrollably without knowing why.

After Zahra emerged, and the midwife brought her to Leila's breast, Leila lifted up her head, smiled with beatified exhaustion, and said, "She's perfect."

But it turned out that she wasn't perfect. On her second day of life, their doctor, concerned by Zahra's yellow appearance, took a blood sample. An hour later he came back to tell them that there seemed to be some irregularity with her red blood cells. An hour after that, he came back again and said that Zahra would have to be transferred to the pediatric ICU for a blood transfusion.

He would never forget the sight of her, sixteen inches long, with an intravenous tube piercing her heel and a bag of blood suspended over her bed. Leila nursed her while she received the blood, and Zahra was able to sleep through most of the transfusion. Samir felt stunned, stupid, and useless. He kept going down the hall to the vending machine and bringing back snacks that Leila didn't want.

Zahra was unable to make healthy red blood cells. The doctors told them that a diagnosis could take months; in the meantime, she needed transfusions to keep her alive. Every two weeks Samir and Leila took her to the hospital, where she would scream as nurses pierced her skin with needles, and then she would collapse into a kind of frightened sleep as the blood dripped into her slowly over a period of many hours. Although the volume of blood she needed was very small, it had to be administered very slowly, so as not to overtax her tiny heart.

In her first year, Zahra endured more physical suffering than he himself had endured in his life. Samir and Leila took her to the hospital once a week to have her blood count checked, hoping every time that it had finally stabilized. Zahra would sit in Leila's lap as the technician prepared the syringe and the tube. Even at six or seven months, she loved nothing more than to joke around, and she would play peekaboo with the technician, smiling at the woman with an expression that seemed to say, "You look nice. Who are you?" She would submit with a smiling curiosity as the technician took hold of her arm, and only when the rubber tourniquet went on would she start to struggle, and then, when she found that her mother was holding her firmly in place, she would finally realize that something bad was happening, and she would start to cry, and when the technician inserted the needle, she would howl, giving out drawn-out cries of anguish and disbelief that Samir would never be able to forget.

He and Leila wondered what it was like for her to be taken by her parents, the people who played with her and fed her and sang to her and loved her, and handed over to strangers who tortured her. The books on child development said nothing about anything like this; and they didn't go in search of books on the psychological development of children with diseases, either because they were so preoccupied by her purely medical problems that they didn't have the strength, or else because they couldn't yet admit to themselves that she was a child with a disease.

Her infant veins were so small at first that the doctors and nurses always had trouble inserting the thick IV needle. They usually had to plunge the needle into her again and again before they succeeded in entering a vein. On one occasion, when she was a little less than a year old, they couldn't find a usable vein in any of the usual sites—not in her heels, not between her toes, not on her legs, not on her hands, not on her arms—and they ended up inserting the IV line into her jugular vein. She saw what they were about to do and she screamed and kicked and struggled and thrashed around madly, and as tiny as she was, it took four nurses to hold her down while the doctor inserted the line.

A person who has had the experience of standing by and doing nothing while watching a group of strangers hold his infant daughter down as she struggles and spits and screams—such a person is never the same again. You pass into a different world. At ten months of age she wasn't close to talking, but when they held her down and forced the tube into her neck, her screams didn't sound inarticulate; she sounded as if she was trying to say something. It sounded at first as if she was trying to appeal for mercy, and then as if she was trying to call for help. She went through her entire repertoire of noises. At first she was yelling, "Nay nay nay nay!" which was a sound she often made when she was in distress, and then she was yelling, "Yi yi yi yi!" which sounded like an animal cry, a plea for help, and finally she started napping her lips, giving out noises that sounded like little Bronx cheers. It was a sound that she normally made when she was happy. But now she was making the sound in panic and pain and fear. It was as if she was using everything she knew, everything she had, to try to make them stop hurting her.

It is a truism that parents are willing to die for their children. Living with Zahra's illness, Leila and Samir discovered that the tragedy is that you can't suffer for them.

Zahra's illness wasn't all there was to her. When she wasn't having needles jammed into her veins, she was a radiant child. She seemed to have a kind of instinctive generosity. When you were feeding her, she wanted to take the spoon and feed you too; when she was playing with a toy, she would give it to you, and then, after a while, she'd put her hand out, wanting you to share it with her as she had shared it with you.

It was a joy to watch her encountering everything for the first time, to see the world being reborn through her experience of it. A few months before her second birthday, they went to Leila's parents' home in the suburbs to take Zahra trick-or-treating on Halloween. They weren't sure she was old enough to understand the idea of it, but after they had visited the first two houses it was hard to restrain her: she would race ahead of them to the next house, holding out her little red purse. The next day, back in Brooklyn, the three of them were taking a walk, and Zahra abruptly and laboriously climbed the stoop of a stranger's brownstone and tried to reach the doorbell, imagining that she lived in a world in which you could walk up to any house at any time and ask for candy. In the spring of the next year, when the Mister Softee truck started to come around, Zahra wanted to know why it was playing music; Leila, health-conscious, told her only that some trucks
liked
to play music, but a few days later, Zahra, in a tone that suggested she had made a discovery that would excite Leila as much as it excited her, said, "Mommy! I think that truck has ice cream!"

After she had learned to talk and began to make sense of the world, the transfusions became both easier and harder. They were easier because she no longer experienced them as random assaults—she seemed to understand that they were necessary—and they were easier because she allowed herself to be distracted. She was a horse-crazy two-year-old, and Samir and Leila would bring her favorite tape to the hospital—
Cloud Dancer: Stallion of the Southwest
—and she would watch it at least twice, completely absorbed, while the blood dripped slowly into her, hour after hour. There was a scene near the beginning that always thrilled her, in which a herd of wild horses runs through a shallow lake. Even in the hospital, she would get so excited that she'd stand up in her chair and call out, "Mommy! They chase!"

But it was also harder, because now she could look ahead. Around the time she turned two, she started to recognize the hospital, so as soon as they approached the building she would begin crying, and when they lifted her out of the car she would attempt the impossible task of clutching onto Leila and fighting her off at the same time.

She began to have nightmares: tigers were coming to get her. Leila would hold her in her arms and tell her that there were no tigers, that she was safe, and Zahra would whisper, "No tigers. I safe," but she'd continue to glance with a petrified vigilance around the room. During the day they'd stage pantomimes in order to make her feel fearless: Samir would pretend to be a tiger, and Zahra would shout, "Get away, you tiger!" and roar at him, and Samir would cower and retreat, undone by her mighty roar. This always made her laugh, and she would insist that they repeat the performance, and soon she was roaring at the breakfast table, roaring at strangers on the street, roaring whenever the spirit moved her. Samir and Leila loved this: they loved to see her thinking of herself as strong.

One day they were driving to the hospital for a transfusion and Leila was on her cell phone, talking to one of the nurses, and Zahra suddenly understood where they were going. She started to scream: "I don't want any blood! I don't need any blood!" Leila tried to calm her, and after a while she grew quiet. After a minute or two of silence, she said, "Are they gonna give me blood?" Leila said yes. Then: "Is it gonna be done?" Neither Leila nor Samir understood what this meant, and they asked her to say it again. "Is it gonna be done?" And they realized that she was asking whether it was going to be over. She was trying to comfort herself by anticipating the end of the transfusion.

Samir was stunned by this. He never would have believed that he could admire a two-year-old, but he admired her.

It took the doctors almost two years to come up with a diagnosis. Finally they determined that she had been born with a genetic abnormality that caused a disease called Diamond Blackfan anemia. Neither Samir nor Leila had ever heard of this disease, but when he started looking into his family's medical background, he found out about a great-aunt who had died at the age often because of a problem with her blood that the doctors had never been able to diagnose.

Some children who have Diamond Blackfan disease can be helped by steroids. After Zahra turned two, they tried a course of prednisone. Samir kept making jokes about all the home-run records she was going to break, but none of them were funny. A ring of hair grew around her face—a sort of Abe Lincoln beard on the lower half of her face and a crown of hair on her forehead—and she became bloated, and her moods grew strange: manic mornings, moaning nights. But the disease continued on its course. She continued to need the transfusions.

Diamond Blackfan is bad enough in the beginning, but it leads to afflictions that are far worse: in the early years it can cause bone deformities, facial abnormalities, and stunted growth, and, in the years after that, diabetes, leukemia, liver failure, heart failure. The only treatment that offers the possibility of a cure is a bone-marrow transplant. Zahra's malfunctioning bone marrow could be replaced by someone else's healthy marrow, which would produce healthy cells. She could be liberated from her transfusion regimen and safe from all the diseases that otherwise lay in wait for her. She could have a normal life.

It took more than a year to find a suitable marrow donor. During that year, Samir kept changing his mind about the wisdom of putting her through a transplant. It would be a terrible yearlong ordeal. It would begin with two weeks of chemotherapy, which would knock out her immune system so the new cells could take root. But it would be months before her immune system came back to full strength, and during those months Zahra would be helpless to ward off infections. She would have no defenses. She would need to spend two months in isolation in the transplant unit, and after that she would need to spend a year in a state of semi-isolation at home. No one who was even slightly ill could be in her presence.