One thing was very worrisome.
A bit of skin just under my jaw had become discolored, obviously dead tissue. Hollis was reluctant to cover it and so treated it with antibiotic gel and cautioned me (not that I needed the caution) not to put my hands anywhere near it. Daily, she measured that spot and photographed it, sometimes as Beth photographed her. I began to have terrible trouble sleeping. Studying the spot, which was half an inch square, I imagined my whole face simply crisping up to a brown frill of burned egg and sloughing off. When I dreamed of that, I woke up screaming in my cell. One night, after I dreamed twice of washing my face and seeing my nose and eyebrows come off when I splashed on water, Aunt Marie sat next to me and held my hand for hours. In the morning, my face was noticeably better, my blood pressure down. With a local anesthetic, Hollis excised the bit of skin from under my chin. “You won’t notice that scar,” she said.
“Especially if there are even bigger ones, like one hundred and twenty square inches of them,” I said.
“Don’t, Sicily. A couple of episodes of rejection are not uncommon at all. You’ve done beautifully. This is a special circumstance, isn’t it?” Hollis said, patting my tummy. People cannot resist doing that, even if your face is coming off.
“If she’s in rejection, why are you still using the new experimental thing?” Aunt Marie asked. “What if it’s not going to work?”
“I still think it’s going to work,” Dr. Ahrens said.
“I don’t even know why it works,” Marie said. “The other stuff was pretty straightforward. You suppress the part of the immune system that has to do with the T cells—which is why she’s at a greater risk for cancer, at least possibly—and she can still fight off infection with her natural immune system.”
“Exactly, Marie. But things that were pretty crude when the first face transplant took place have come a long way.”
“So with that, she might not have experienced any rejection?”
“She might well have. And if she had, in the early months, that would be no indicator of how well she would do after the transplant really took. It depends on so many factors. We immunologists started out just studying infectious diseases, so that’s what we knew how to prevent.”
“I thought you were an internist,” my aunt said.
“Both,” said Dr. Ahrens.
“So what you suppressed at first …”
“Was the kind of immunity that depends on T cells—in the very simplest terms, the cells that basically yell,
Hey, look, kill this!
But when we suppressed them, there was no real backup, no real surveillance system, so it makes sense that certain kinds of viruses, like Epstein-Barr—which is linked to an increased risk of lymphoma and maybe leukemia—have an easier time sneaking into the house.”
“But this is different.”
“Auntie,” I said, “it’s like homeopathy. You give a bit of the bad stuff so that the body learns to protect itself from the bad stuff, except it’s not really bad stuff. It’s just, for my body, unfamiliar stuff.”
“Homeopathy is quackery,” Marie said.
Dr. Ahrens said, “Sicily is putting it a little too simply. What we’re giving her now is what we would have given her
before
the transplant if she had been on this new protocol. Which isn’t approved for us to do. We’re giving her donor-specific class-two MHC peptides—”
“No—please, I work in
television
news,” Marie said.
“We’re giving her medicines that contain protective protein materials like the ones that were in
Emma’s
body, so Sicily’s body doesn’t scream,
Kill that!
And since it’s more like Emma’s body, there’s just less … mismatch strangeness and …”
“Fewer burglars sneaking into the house.”
“Exactly.”
“Why didn’t someone think of this before now?” Marie asked.
“People have been thinking about it for nearly fifty years,” said Dr. Ahrens. “But the big research bucks for transplant technologies weren’t really there, because this isn’t what kills sixty-year-old bankers. It’s only in the last ten years, when people like Dr. Grigsby proved that a hand transplant or a face transplant could be a life-enabling issue and not just a quality of life issue for some people, that the work started to look really, really good.” She paused and instructed the space-suited phlebotomist to draw two more purple tubes of blood, then said, “This is going to be okay. Sicily is the first cathedral built with this therapy, but we already had three-D blueprints for the design. We’re just tinkering with success here. I know it. I know.”
“Okay. Should I know?” I asked.
“Yes, It will help if you know. Your father was a fireman, right? Every day he had to exercise a little denial, right? It’ll be good.”
And so it seemed. The numbness and itching disappeared quickly, as did the overall flulike aches, but part of that might have been inactivity. Exercise is making love to your heart—and your joints—after all. Before any of this ever started, if I didn’t get my workout, I got a pain in my neck and became a pain in the neck to everyone else. I’d done my best, but this situation was in every sense the true meaning of “confinement.”
Dr. Neville decided it was time—“It was high time,” he said (frankly)—for an amnio. And so, using an ultrasound machine, with my bladder engorged with water, Dr. Neville searched for a place to withdraw a syringe of amniotic fluid. Every time he thought he had a bull’s-eye, the baby moved. When that happened, Dr. Neville turned and stared at me.
“I’m not making the baby move around,” I said.
“I realize that,” he answered. He set forth again. Just as he was going in with his needle, the baby did a full roll, and I heard Dr. Neville’s muffled curse.
After forty minutes of near sticks, Dr. Setnes said, “We have the nuchal fold—”
“That’s not really as significant as what we could have here, Doctor.”
“But you don’t want to take the risk of doing harm to the fetus,” I said. Dr. Neville must have been mute in his childhood. His transparent blue eyes were eloquent with sour scorn. “From my point of view, we’ve had enough tries. This is not going to happen.”
“Well, I will not do this procedure, then,” Dr. Neville said, “although I am concerned and think it would give us necessary information about what needs to be done if this baby should be born in distress.”
“We’ll monitor it very closely,” said Dr. Setnes as Dr. Neville, syringe aloft, made his exit.
When he was gone, Dr. Setnes, far from handing me a folder of readings about parenting the challenged child, endeared herself to me for life by saying, “I have always had difficulty taking anyone seriously whose first name is Wayne.” I started to laugh and she continued, “It’s like naming a baby girl Lula or Nettie. It’s asking for trouble.”
On the following Monday morning, my buzzer sounded. I’d requested and been given blackout shades in my room, so I could sleep in the cocoon of darkness I needed. It felt like it was freaking four in the morning. My sleep since the second episode had not been the best. I got up, looking like a Japanese drawing of a girl demon—all ratty hair and nasty breath—and pulled open the inner door.
There was Julia Cassidy. It was only the second time I’d seen Emma’s mother since the transplant. I hadn’t heard from her since Hollis laid the pink quilt with the screened photos of Emma across the foot of my bed.
“Sicily,” she said. I didn’t hold out much hope for a great chat. The look on her face was grim. She was rightfully pissed at me for not getting in touch, for her having had to read about the pregnancy in the paper and hear it
on TV
from my aunt instead of in person and from us.
“Mrs. Cassidy.” By habit, I placed my hand palm out on the plastic, my prison way of greeting people I couldn’t truly touch. Mrs. Cassidy didn’t respond. She looked different, in a good way, dressed in a short skirt and a little jacket, her hair in a thick layered bob with tiny stipples of blond through the brown. She stood formally, one of her hands looped around her wrist. I said, “You look wonderful.”
“I’m married,” she said. “Eric and I are moving to Myrtle Beach. This week.”
“Congratulations,” I said. “I’m very happy for you. A new life. It’s good.” I had thought that Eric, Mrs. Cassidy’s stylist partner, was gayer than Christmas. Maybe he’d had a conversion experience. Maybe they were fabulous business partners. Maybe—I had personal experience of this—loneliness was the most potent aphrodisiac. In any case, whatever Eric did with Mrs. Cassidy had revived her. She appeared ten years younger—buoyant but also quieter somehow, as though she were a haunted house that had surrendered its ghost, cleansed in light when it departed. Maybe she had let Emma go, I thought. It’s difficult to understand how I could have thought that, how raw and shallow I was even then. I smiled at Mrs. Cassidy and said, “I’m sorry for how I look. I hadn’t gotten up to dress. I thought it was earlier. I tend to sleep a lot in here.”
“How could you do this?” Nothing on my face betrayed the shock I felt. Annoyance, I’d expected. Some part of me waited for her to go on. I thought I knew what she meant, and I did—but not to the degree she meant it. “How could you take Emma’s sacrifice so lightly?”
“I never did, Mrs. Cassidy.”
“You could lose your face! You could lose the face Emma gave you!”
“I could die, actually, Mrs. Cassidy. But I’m betting against that and so are my doctors. I think the odds are on my side this time.”
“You accepted Emma’s beautiful face and then went and got yourself pregnant.”
This is one of the most troubling turns of phrase in the English language, and I’m sure people say it to women in German, Urdu, Amharic, and Portuguese. I’ve never known exactly how to counter it effectively, not that I’d ever had to. Careful was the way to go. Careful and thoughtful and acknowledging and respectful both of her loss and her renewal.
“I’m sorry you’re upset,” I said. “And I’m sorry for the way this seems to have happened. But it didn’t happen that way, Mrs. Cassidy.”
“There’s only one way it can happen, Sicily.”
Careful. Respectful.
“Yes. Of course that was unwise of me. But you and your husband were young and in love, and if you had been expecting Emma before you were married, you would still have wanted her, right?”
“We were expecting Emma before we were married.”
“It wasn’t a planned pregnancy?”
“No. But I wasn’t a woman who’d made the choice to give that up.”
“Give up … I didn’t give up wanting to be … to have … I had the face transplant in part because I wanted a normal life as a woman.”
“I thought it was so you could function,” Mrs. Cassidy said bluntly.
“It really helped with fully closing my mouth and eating,” I said. “And breathing normally. I could do those things before, but I had difficulties.”
“I didn’t think it was to get men.”
Whoa. Wow. I was caught hard and breathless by that. Dozens of retorts popped up and were flipped away or crushed, like bad attempts at a love letter. It was, in fact, Mrs. Cassidy’s sacrifice that had given me my face. Emma was past the point of being able to make that decision. I had to remember that and remember that a basic bluntness was part of Julia Cassidy’s personality. She didn’t mean to make me sound like some cheap slut for whom Emma had given the whole tortilla.
I finally said, “Mrs. Cassidy, you care more about your appearance now. You look wonderful. That’s part of being alive, isn’t it?”
“I think a transplant should be for a higher purpose.”
And I did too. For weeks and months, I had agonized over Emma’s loss measured against my gain, wondering if I was worth it. And now I realized that this baby might be the purpose. I had prayed to change my life but not specified how that change must be manifest. I had wanted to feel passion—to feel, altogether—but those feelings didn’t come with guarantees on parts and labor, like toaster ovens. I had gotten my heart’s desire, albeit in a way that was different from anyone else’s way. It might be that my way—my parts, my eventual labor—would always be different from anyone else’s way. Standing there in silence, separated by my barrier from Mrs. Cassidy, I began to see that I was only beginning to use Emma’s face, now my own, for a purpose beyond my own happiness. Even my way of making my living had been nearly reclusive, tailored to my disability; it did not take full advantage of all that I could do or be or care about. My life with my child, I decided at that moment, would be lived on roads I had never risked. There was no other choice, so I might as well seize the one in front of me.
“You’re right, I think,” I told Mrs. Cassidy. “You’re absolutely right to remind me of that. And I can’t ever be grateful enough to you. All this, even my child, is part of what my parents would have wanted for me, and you made that possible. Please don’t be angry. If I risked Emma’s face for this reason, well, that’s what Emma would have wanted. It’s part of the whole tortilla, isn’t it?”
Seemingly baffled, Mrs. Cassidy paused for several excruciating minutes, during which I knew it would be disastrous to say anything more. Then she quietly told me goodbye. At the last, just before she disappeared out of sight on her way to the elevators, she also wished me good luck.
——
Five more weeks (and ten long novels) crept past.
In my journal I wrote,
Now it’s really spring. Outside, there are children in a playground I can almost see. If I could open the window, I would hear them being mean to one another and forgetting it an hour later. Someday that’s going to be you. Hang in there. Love, Mommy
.
The aches and pains I experienced now were from inactivity. I was getting too big to really move, much less do a plié. I wanted my joints to stay nimble, so I did my stretches lying down. Each day I waited for an email from Upstart Productions. When one came, I waited until I had written ten letters of comfort to other fire victims, or studied the book Renee brought me, or eaten as much raw fruit as I could without become the monster of flatulence (there were benefits to living in a sealed room). The notes were innocuous.
You must be going buggy inside. Vincent