“There will be no documentation,” said the hospital’s lawyer, Joel Brodsky. “If it’s not medically necessary, it can’t happen.”
“It can happen,” said Sicily. “It just hasn’t happened so far.”
“Let me tell you why,” said the lawyer. “Sicily, it’s not personal.” The guy explained that the first and most obvious objection—and, Beth thought, escape hatch—was the way in which documenting an entire face transplant, from the location of the donor and the recipient to the aftermath, would violate federal health privacy law. “The Health Insurance Portability and Accountability Act was signed into law in 1996, mostly to protect those with chronic health conditions from being denied health-insurance coverage. But even where that doesn’t apply, patient privacy is a primary concern at this institution, not for the protection of our staff but for our patients. This means that Mrs. Cappadora cannot observe the surgery, and there can be no way she could photograph it.”
“She agreed,” Sicily said.
“It’s not a consideration,” Joel Brodsky put in. “Mrs. Cappadora—”
“I don’t mean Mrs. Cappadora. The donor agreed. She’s sixteen. She’s a minor. Or she was. Her mother has her health directive,” Sicily said. “And she would be eighteen under the law now, and she signed—”
“Dr. Grigsby,” Kelli Buoté, the social worker, pleaded.
Dr. Grigsby held up an admonitory finger. The twelve representatives of the University of Illinois Chicago Circle Transplant Clinic regarded Sicily, Beth, Marie, and Julia Cassidy.
“Mrs. Cassidy is Emma’s mother,” Sicily said. “Emma is my donor. Mrs. Cassidy knows that and I know that. I have visited Emma and spoken with Mrs. Cassidy on several occasions, and so has my aunt, Marie Caruso, who is my adoptive mom, and my friend, Beth Cappadora, who will do the photographs.”
“This is an end run,” Kelli said.
“And the legal risks are incalculable,” Joel Brodsky added, replacing his wire readers as if to announce that the discussion was over.
“What if you were to die, Sicily?” asked Kelli.
“I wouldn’t die because Beth was taking pictures. Obviously, if I died during the surgery, it wouldn’t be such a good aesthetic and public awareness tool. What if I were to die? Write up some form and my aunt will sign it. She has my health directive, just as Mrs. Cassidy has Emma’s.”
“It would be a disaster,” said the attorney.
“As it is a disaster, personal and professional, when any patient dies,” said Dr. Grigsby. The tall, slim, dark woman said nothing else but lifted an eyebrow in Eliza’s direction.
This is how she gets her way, Beth thought. She’s so used to being the alpha female.
“Eliza approached Sicily at your bidding,” Beth said. Eliza winced.
“My … bidding?” Dr. Grigsby said softly.
“If you didn’t tell her to do it, then, as her mentor, you made it implicit.” Beth took a deep breath. “I didn’t want to do this either. But Sicily is determined—”
“I do not doubt that for one moment,” said Dr. Grigsby.
“She is committed to … to … letting people see how this process could change lives. More lives. That’s in your interest,” Beth said. Dr. Grigsby said nothing—which was a skill Beth Cappadora had never mastered. This woman put Beth on edge: Her face had the kind of serenity that God seemed to offer only to black women, and only some of those. Her hands did not seek each other out to twitch and wrestle, as Beth’s did, the tapering tip of each well-tended finger lay motionless on the conference-room table. She wore not even an earring or a wedding band. By comparison, Marie Caruso, although demure in a black silk suit, appeared almost gaudy with her diamond studs and two opal rings.
“You … you … violated the law even by meeting with Mrs. Cassidy,” Kelli spluttered, her knuckles white as the coffee cup, her other hand drumming. “You—and your friend here—were never supposed to meet the donor. This is still new land, Sicily. But there are minefields we know enough to avoid. There’s a process. And the legal and emotional ramifications are real.” Kelli’s eyes filled. “Sicily, you know better than this. You’ve been around the block. Why? Why?”
“She thinks it is the right thing,” Beth answered for Sicily, sensing a wobble in her. Though she’d known Sicily Coyne only a few weeks, already Sicily roused the Irish in Beth. If Beth had lived a life strange in the magnitude of its losses and blessings, then Sicily’s was the life of a saint. To her own surprise, Beth realized that she had all her chips in. Even her mother-in-law had encouraged Beth, saying, “Of course I remember that poor child. Elizabeth, there was nobody who didn’t have a child or a niece or a friend’s child in that fire. It had an effect on people’s lives all over the West Side.” And Beth remembered how self-absorbed she had been then, twelve years before, with Vincent dropping in and out of college, with fighting Pat, who wanted her to be a lady of leisure, to take her career back. Such petty, petty tempests, seen from her vantage today.
Recovering her nerve, Sicily said, “I’m sorry. But Beth is correct. Meeting Emma was the right thing. For me and for Mrs. Cassidy. She feels comforted by knowing where Emma’s face is going.”
Kelli said, “She doesn’t know where her daughter’s donated heart is going. My apologies, Mrs. Cassidy.”
“A heart isn’t a face,” Sicily said. “Hundreds of heart-transplant recipients have met their donors’ families and corresponded and … all that.”
“We can legally …” Joel Brodsky began. “We’re talking here about twenty physicians and skilled surgical nurses. Even they have certain rights.”
“That’s not true,” Dr. Grigsby said. “We might object, but we submit our work to colleagues and students every day, and there is no legal prohibition to this. Livingston?”
“Just so,” said Dr. Grigsby’s co-chair.
“Why are you seeing this as a wrong thing?” Julia Cassidy asked. She pulled a creased sheet of paper from her pocket. “Listen to this. Emma wrote it before she died, right before she went to that party and never woke up afterward.” She read: “What is the meaning of life? I have no idea. Making others happy is the whole tortilla.”
“I don’t think the problem here is legal,” Dr. Livingston said. “It was a bridge we would cross in due time in any case, since the ideal donor has geographic proximity.”
Facial tissue survived, Beth knew from Sicily, for about eight hours. Six hours was better. Four hours was better than six.
Julia caressed the elaborate festoon of her updo. She was a hairstylist, and the “girl” who rented the chair next to hers had come in early to prepare Julia for this meeting. Julia, too, wore a silk suit, in bright lapis, and brown heels, which troubled Beth more than the updo. But she spoke her case convincingly. “It was as though my Emma knew. She signed her donor card just two months before it happened, when she got her first driver’s license. It was later than most people, because she kept having to take the class over, sophomore and junior year, so she was almost seventeen; it came harder to Emma for those decisions we have to make all at the same time, like, do I turn now, or do I wait until the next light? Those just weren’t instinct for her at first. It was all overwhelming to her, but when she finally got it, she was totally an excellent driver. She never got a ticket. A warning once, but that was at the place that’s basically a speed trap, where the sign says forty-five on one side and twenty-five ten feet later. You practically have to slam on the brakes.”
“Mrs. Cassidy, no one thinks Emma’s heart was anything other than pure,” Joel Brodsky said, in the kind of tone that might have induced vegan Buddhists to at least try a hamburger. “If Emma was here now—”
“She is here,” Julia said.
“If she was here at this table—” said Joel Brodsky.
“She is here at this table,” Julia insisted. “Her spirit is here.”
“Well, if she could speak for herself, I’m sure she would say that she’d do whatever she had to, to help, as she
wrote. But you and Emma have already done the right thing by consenting. This is an invasion of your family’s privacy that you will regret later. Think of your relatives and how they will react to seeing very graphic depictions of Emma’s tissue.”
“It’s her face,” Julia said. “Her face and neck. And we have no family. I’m it. No one but Emma and me. Jared’s mother is in a nursing home; she has dementia. It was an early thing, and Emma was heartbroken because she adored her Grammy Linda—”
“You have no other family?” Beth said. “Your daughter is your only family?”
Julia said, “I’m a widow. You know that. And I have a brother I don’t see. So, yes.”
Beth smiled and thought, Oh, fuck, no. This is impossible.
“Come on,” Sicily said. “Everyone has to do something for the first time, or nothing would ever change. What could go so wrong that it would be worse than the Canadian nutcase?”
Hollis grimaced at Livingston, who could not suppress a smirk.
“And no one even talks about him anymore. Emma is not ashamed of her gift. Mrs. Cassidy is not ashamed of her choice. I am not ashamed to receive her gift. I’m honored.” Sicily turned to the hospital’s counsel. “Mr. Brodsky, no one is breaking the law. You are advancing it. If you didn’t want to handle junk like this, you should have done, like, real estate.”
“And right now I wish I had,” Brodsky said. “You call it, Dr. Grigsby.”
Dr. Grigsby nodded.
CHAPTER EIGHT
They tuck you up in tons of warmed blankets when you’re waiting in an operating room, because those places are kept at the temperature of meat lockers.
I guess they are meat lockers.
If you should ever be alive on a really narrow metal bed, looking up at someone, and you want to know why your nose is cold, that person will tell you it’s to prevent infection. Which is not true. Even some OR nurses and doctors would be surprised to hear that, because they believe it. The fact is, a person who’s hypothermic for a long time gets a weakened immune system, and more people die from hospital infections than from cancer and heart attacks. I’m not showing off. But lots of people die from medical errors too, which is really why operating rooms are cold. It’s to keep the doctors and nurses from getting too hot. They have gloves and gowns and hats on over their scrubs, and the lights are merciless, as is the gradual buildup of heat from everyone else who isn’t the patient. So you balance the odds of getting an infection with the odds of a doctor having a little slipup and dropping a hemostat into your intestines—or, in my case, my sinuses.
This particular surgery was going to last a long time, like maybe up to twenty hours, and there would be at least twelve people in the room at any given time. Dr. Grigsby—whom I had begun to call “Hollis,” because she called me “Sicily”—said that there was every likelihood that doctors and nurses would be replaced by other doctors and nurses so that they didn’t become exhausted: There might be four full teams. I didn’t know she had four full teams or even that the U of I did.
“You don’t mean the second string, right?” I asked her.
“No,” Hollis said. “Everyone is the first string.”
That’s not true either, but it was probably the case that there wouldn’t be many first-year interns working on my face. I knew Eliza would be, and that was a source of strength. I had told Eliza I was willing to have a discreet wrinkle or two for the consolation of her and Beth’s presence—because Aunt Marie could not be with me. In fact, by the time my surgery was scheduled, in June, I had spent so many evenings and some days with Eliza that Kit Mulroy was saying things to me like, “Is she your new best friend? Do I have anything to worry about here?”
The blankets are a comfort. Those blankets and kind words, no matter how nonsensical, are the only comfort the nurses and doctors can offer a person who’s terrified.
And guess what?
I was terrified.
Every other time I’d had surgery, I knew that I would wake up and the doctor would say, Hey, we really restored some symmetry here but, in fact, not much is going to change. This time, when I woke up, everything was going to change. I would either look like a cross between myself and Emma or like a raw hamburger. And my whole future would be different.
There was a boy I had met once, in the hospital, a child, who’d had corneal transplants. The first time he opened his eyes, he could feel seeing. It was almost physically painful. There was too much to take in, and it was all so clear and brightly colored.
I thought that might be my own experience.
But I was pretty sure that, however I felt, it was going to splatter me all over the place emotionally.
That would be normal. Some of it, Polly and Kelli Buoté had tried to prepare me for—Polly with individual sessions both before and after I was in the hospital, Kelli with a novel’s worth of printouts about community resources. There’s no Face Transplants Anonymous, but there are body-image groups and post-surgical groups and post-trauma groups that people attend for months or years. Sometimes, friends from these groups are the only ones post-trauma patients have. Sometimes, that’s where they meet the special person they marry. The thing was, I’d been to most of them as a kid. As an adult, I’d been the speaker at some of them.
The best thing Kelli had promised to do was put me in phone contact with a guy in Virginia, a fifty-five-year-old grandfather who’d also had a face transplant.
“One guy?” I asked. “Isn’t there someone closer? Like in Indiana? Someone I can actually meet face-to-face, so to speak?”
“There are a number of people closer. But he was the one who agreed to talk to you,” Kelli said. “And only on the telephone.”
“What’s wrong with the others?”
“Sicily, most people are very private about this kind of stuff. You’re obviously the exception.” Kelli still wasn’t entirely okay with the fact that Beth had been taking pictures since I’d come to the hospital and was even now receiving her gown and instructions about where she could and could not move or sit during the actual procedure.
“Why are they so … guarded?” I was genuinely puzzled.
“They gradually reintroduce themselves to the community.”
“You mean, they try to pretend they just had lipo?”
“No, Sicily. Some face transplant recipients have lived their lives in a very protected way, some with only their immediate family seeing them. It’s a process, going out into the world, and it’s as much about their reactions as other people’s reactions to them.”
I knew that I would have some bruising and swelling. The team had impressed this upon me, oh, about seven hundred times. I was not to expect that when the bandages were removed after five days I would look in the mirror and see a movie star. Some residual scarring, probably below my neckline, could be permanent, although not cosmetically severe. Someone even gave me a kit of all this therapeutic makeup and demonstrated how to use it to cover the temporary bruises and the permanent scars. I’d already tried stuff like that, which is sort of like corpse makeup and is used to cover birthmarks as well as scars. But it’s so gross and heavy, for me anyhow, that I gave it up. For work or going out, I had recently begun to use stage makeup. It worked almost as well and it seemed like it was harder to sweat it off.
It wasn’t like I was fooling anyone, after all. My makeup was just meant to take the edge off.
That morning at about 5:00 a.m., a nurse had given me some woozy juice, probably IV Versed, to take the edge off while I was still in my room. When you’ve had as many surgeries as I have, you have approximately the same drug tolerance as a Clydesdale, no matter what you weigh. I could have recited the periodic table, if they hadn’t added all those new, crazy mixed-up elements. I tried reciting the names of the bones of the foot, but I got only to the calcaneus before I fell back to my sad pondering about what Mrs. Cassidy was doing right now. Somewhere on the same floor as I was, she was saying goodbye forever to Emma—or already had.
&nbs
p; Because doing the right thing was “the whole tortilla” for Emma, it was better for her to be in the hospital rather than at a facility like Sundial. Once they “harvested” her—my—face, the surgeons would step back and let other transplant physicians take her heart, her healthy lungs, and her beautiful hazy brown eyes. Weather and other delays can really be hell on organs, so it’s better that they come from the neighborhood, and I know how that sounds. Mrs. Cassidy would not be there for the horrible bits, but I thought of her agony as something like Mother Mary’s. Yes, Emma was gone, but it was also true that Mrs. Cassidy (whom I never called “Julia”) had sacrificed Emma, the only thing she loved, so that others might live. And so that I could have the full woman’s life Emma never would. And then I realized that this is why you didn’t get to know your donor or her family. I cried until I threw up (nothing) in the green plastic basin. The emotions were absolutely torrential. I’d outfoxed myself.
Of course, the way I found out about Emma was by calling Mrs. Viola, the mother of my old school friend Victoria, who had died in the fire. Despite all those months after the fire when she’d become my ghastly, needy stalker, Mrs. Viola had finally remade her life. She found meaning in caring for people who were going to “cross over” soon, to where Victoria was. She’d done this not in an insane way, or so my grandma Caruso, who knew Gail Viola pretty well, told me. I’d called Mrs. Viola one day last winter, after the preliminary testing, because the very few hints of the way Kelli described the place where the young woman was gave me a hunch. Not many places like that were as nice as Sundial and also took welfare, which is what Emma was on. Sundial was not a real hospice, run by the national organization, where some terminally ill people received their last care. It was something between that and a nursing home. In order for Emma to go there when she left the hospital, after there was no more that anyone could do, after it was clear that Emma could never get better, Mrs. Cassidy had reduced her hours, given up her little house, and gone on assistance.