A Little Love Story (17 page)

13

O
VER THE NEXT TWO DAYS
, Janet and I had a couple of short stretches of being alone, and two phone conversations. I was not comfortable with the idea of her leaving the hospital, but that was not something I could say. I understood why she wanted to. I understood it a little better every time we talked, but I was nervous about it. We decided it would be simpler for her just to slip out of the building, rather than be officially discharged. That way she could walk back in and take up where she’d left off if she had to, and we both knew she would have to.

Except for some psychiatric wards, it is not very hard to sneak out of a hospital. Janet had been in that particular hospital so many times that she knew the schedule of the doctors and nurses, when they made their rounds and when they took their breaks. And she’d been a patient on that floor so often that she knew which nurse would be least likely to pay attention to her when she walked down to the reading room at the end of the hall for a little exercise once the IV was done. The reading room is open to visitors. It’s a simple matter to have someone put a change of clothes in a tote bag and leave it just inside the leg of the sofa there. A simple matter to take the tote bag into the corridor bathroom, change, and then walk out and down the stairwell in street clothes. Sunday mornings are a little easier than other times to try this.

The antibiotics had, as Doctor Wilbraham promised, made Janet feel stronger, and she left a note for her favorite nurse so there would be no panic when they discovered she had gone. At nine-fifteen on Sunday morning she walked out of the building on her own, dressed in jeans, a wool sweater, and cowboy boots.

I was waiting in my truck by the main entrance. I had her winter coat and hat and gloves in the cab, and three portable oxygen tanks wrapped in their narrow blue backpacks with gold trim. When she was on the seat and warmly dressed and we were driving away from the building, she clipped the oxygen on under her nostrils, but left it there for only a few breaths.

“Where to?” I asked her.

“Manhattan. I want one night in a nice hotel. And don’t expect any gymnastic lovemaking.”

“The rings,” I said. “The parallel bars.”

She reached over and put a hand on top of my leg.

“Your mum’s going to be upset.”

“She’s at Mass. I called and left a message on her machine.”

“Doctor Wilbraham isn’t going to like it.”

Janet didn’t answer.

At that hour on a Sunday there was almost no traffic. After I asked her if she was hungry and she said no, I found the expressway on-ramp and we headed south. We drove for a long while without saying anything. The landscape there is mostly flat, and bleak at that time of year: patches of maples and oaks with a few brown leaves clinging to the branches, clusters of strip malls, and then frozen fields with the occasional sagging white Colonial presiding, the farmland waiting to be bulldozed and built on. And then, sometimes, like a surprise, an old New England town with slate-roofed houses, a mill, and church spires. I looked over at Janet occasionally as we went along. She seemed to be studying everything, drinking it, searching the American landscape for some hidden meaning that she’d missed in the last twenty-seven years. Somewhere near the Rhode Island line I asked her where she was on the transplant list.

And she said, “Stop it, Jake.” Not in any kind of an angry way, but in a plain, even tone, the way someone who knew you well might ask you to turn off a radio. So I didn’t try to start any conversation after that, figuring she ought to have everything the way she wanted it for those twenty-four hours: the place she wanted, and the food, silence if she wanted silence. I decided that if I was worth anything as a person, I ought to be able to let her be with what it was she had to be with then: not urge her to fight it if she was tired of fighting, not ply her with hope, not make her think about who might be upset or worried, not ask anything of her, nothing, just be alive with her while she was alive.

Somewhere in the southwestern part of Connecticut, just before we passed into New York State, after she’d been sucking on the oxygen for a while and quiet for a long time, she started to talk, without looking at me. “It’s so odd,” she said, and if, when we’d first met, her voice had been coming up through a wet barrel, then on that ride it was coming up through an echoing, rain-filled quarry. “It’s so odd. I think about my father all the time now. I wake up in the middle of the night thinking about him. He wasn’t an educated man, but he could imagine his way into the future in more detail than most people. He saw this, what I’m like now, he saw it twenty years ago. That’s all. When I was a girl everyone else said I looked fine, I was going to be fine, they were going to find a cure, and if I’d been born fifteen years later that would have been true probably, but…year by year he saw that that was just a hopeful lie and it slowly made him crazy. He was shaky to begin with, my mother says—his father went out on the streets a few years after he was married. ‘There’s a gene for quitting in them,’ my mother said once or twice, in her worst moments. From the day I was diagnosed—I was six weeks old—he started calling up doctors and asking them what would happen to me, and when. He never stopped pestering them. He was a big, strong, simple man, a union mason who specialized in heights, working high up. You would have loved him. If the doctors were evasive with him, he’d start to yell. He used to tell my mother about it while she was cooking dinner. I’d be in the living room watching cartoons or something and he’d be pacing back and forth in that tiny kitchen, all upset. ‘They think I don’t understand, Amelia!’ he’d yell. ‘But I understand better than they do! I understand fine! Perfect! Better than they do!’ Now my mother says the same thing.”

She stopped and put the oxygen up to her nose, and I held the pickup in the middle lane of the highway, flying past the little harbor at Westport, where most of the sailboats were wrapped up and drydocked for winter.

“Once, when I was eleven, he went to the office of the CEO of a huge drug company. He took a day off from work and dressed up in one of the two suits he owned—one for cold-weather funerals and one for warm-weather funerals, he used to say—and he drove his six-year-old Chevy down to some corporate headquarters somewhere in New Jersey, uninvited, without an appointment, and he sat in the waiting room of the president or the CEO. All day. Of course, the man wouldn’t see him. He waited and waited there in his suit as if he was going to sell them something. Finally, at five o’clock he just lost it and he went right in past the secretary and burst into the guy’s office and pounded both his huge fists on the desk and demanded to know how the guy could live with the fact that kids were dying of this disease and his company was spending exactly zero dollars on research for drugs to cure it.”

All of this didn’t come out at once. She’d speak in long, monotone, wet-quarry bursts, then take another few minutes of oxygen, then say another few sentences. I drove and listened.

“Know what the CEO said to him?”

“What?”

“My mother told me all this after he died. He said, ‘I’m sorry about your daughter, Mr. Rossi, but it’s pure mathematics.’”

“Meaning what?”

“Meaning thirty thousand people have the disease in America, and you don’t make enough profit selling thirty thousand of anything to justify spending millions of research dollars. My father couldn’t wrap his mind around thinking like that. He accidentally woke me up when he came home that night, he was yelling so loud. ‘Pure mathematics!’ he was shouting in the kitchen. ‘That bastard! That son of a bitch!’”

She had started breathing more heavily, so she stopped talking for a while. We hurtled along 1-95, past the knot of glass-walled buildings that is downtown Stamford, all the confidence and optimism there, all the shine. I tried to remember if I had ever heard my father shout, in the house or anywhere besides at a Red Sox game. He arranged deals for businesses and managed money for people in an office in a thirty-four-story building downtown. He advised clients on the best kind of investments to choose so they would be as comfortable as possible when they grew old.

“They sent me to a camp for CF children when I was fourteen, because they thought it would be nice for me to be around other kids with the same sickness. But it turned out that we all ended up giving our germs to each other. They don’t do CF camps anymore because of that. The camp was where I got the
cepacia
, and when my father found out about it, and heard what it was, and what usually happens to people who get it…that’s when he jumped. My mother says he gave up, that he just couldn’t take it finally, that he quit. She had to go to work selling shoes at Jordan’s when he died. She’s bitter, she has a right to be—she had to sell our car and never even had another one until I bought her one, four years ago. And probably he did give up. He had problems. I remember some days he wouldn’t go to work and would just lie in his room pretending to sleep…But the thing I remember most about him is…I can almost reach inside myself and put my hand on that feeling, even now…he loved me more than anything, Jake…he…I don’t think everybody has that kind of warmth in their lives.”

“Not many people have it,” I said.

“I never told anybody this, not even my mother, but he appeared to me the day after he died. I had a vision of him. There were a lot of people in the house and I went outside alone for some reason, into the back yard, and he was there. He didn’t say anything to me, but he was there and looking at me, and I could feel that love. Really…You think I’m crazy, Jake?”

“No.”

“Or that I was temporarily crazy, or not breathing right or something?”

I shook my head. “How old were you again?”

“Fourteen.”

“It’s a lousy age to lose a parent.”

“But the reason…the thing I want to say is…” She stopped and rested. We crossed into New York State. “After I saw him there, I was never afraid of dying. I’ve seen four friends die of CF, three in the hospital and one at home. Three of them died pretty calmly, but I was holding my friend Celia’s hand when she died. I was seventeen. It was horrible. She was making horrible noises, like a dog that had been hit by a car, huge, drawn-out moans that started in her throat and rattled her whole head. Her hair was on the pillow—I remember this—and it was shaking there as if a wind were blowing through it. Her mother was hysterical, slapping Celia’s feet and legs so hard to try to keep her alive that the nurses had to restrain her. It was horrible. I worry about the pain of dying like that and I get panicky when I’m out of breath, but I never worry about being dead. Whatever else happens, it will mean I’ll just be free of this body. I won’t have to work to breathe.”

She stopped and rested again. She coughed, looked away from me. “Until I met you, I never even cared about living very much. I’d had so much time to get ready for the idea of being dead, you know. And being stuck in this body was not exactly a picnic.”

I started to say something, but she waved at me not to.

“When you jumped in the river that time after I fell in, and you came up sputtering and slicked your hair back and it was all standing straight up, at that minute I started to care. I wanted to have some fun with you. I wanted to see if…I’ve never had that much real luck with men. I mean, I had boyfriends I liked, I had enough sex. But I always felt there had to be some deeper level of intimacy that I could get to, some truer connection I could feel…So now I know I was right about that, and I know what it feels like, and I want a few more years of it. That’s what makes it shitty.” She flung one hand, palm-inward, toward the window. “But I can deal with everything else, the fear and the mess and all the ugliness and everything. I just wanted to tell you that. I just want you to be able to deal with it, too.”

14

W
E MADE IT TO
New York City by 2:00 p.m. and checked into the Waldorf-Astoria, two toothbrushes and the portable oxygen machines for luggage. I had been there once before, with my parents, when we’d gone down to New York for my sister’s sixteenth birthday, and I’d been there once with Giselle. I love the lobby of that hotel, with its tile floor mosaics, and the stupendous bouquet of flowers in a vase there on a mahogany table. I feel religious in old hotels, an urge to believe, to worship. I don’t know why. I mentioned that to Ellory once, and, without even having to think about it, he said that the whole purpose of prayer and fasting and meditation and the monk’s life was to make you stop taking everything for granted, make you actually
see
a table or a tree or a person, instead of worrying about survival and pleasure all the time. If you can just do that, he said, then you’re all set, as far as God goes.

So I guess I was all set then, in the Waldorf-Astoria, because when I walked into the lobby from the street, holding Janet’s hand, I was seeing everything clear-eyed.

When we got up to the room, Janet wrapped herself in the thin chenille spread and fell asleep with her clothes on. I stood at the window and looked down on Fiftieth Street and everything was a little bit shocking to me in a way that I’d almost forgotten things could be—the tar rooftops and rust-stained water towers, the windows across the way with their pigeons sitting on stone sills; down below, Christmas lights, and yellow cabs angling across traffic lanes; crowds of people on the sidewalk, so many histories there, so many different worries and loves and connections. I watched the light and color seep out of the day. I put one fingertip to the cool glass. I felt like I was linked to Janet and had been linked to her for centuries, and that we were both linked to every person in that city, and at the same time I felt a kind of warm solitariness. For a little while, everything was exactly in its place, all of it made of the thinnest porcelain. In the next breath it could all shatter and remake itself in a different form and nothing would be lost.

I ordered a twenty-dollar glass of brandy from room service, gave the young man who brought it a ten-dollar tip, and sat there sipping as the room went dark. I imagined that Janet and I had children, a boy and a girl, adopted from Vietnam for some reason. They were three or four years old, precious creatures. We were on vacation in New York with them, showing them the holiday decorations, taking them into toy stores, zipping their jackets, holding them when they threw tantrums or when they were cold. I was connected to them in the same way I was connected to everyone else, only more deeply, more warmly.

Janet said “Beethoven” in her sleep. She was a gray shape on the bed. I breathed in and let my breath slowly out, and soon I was just my ordinary self again, sitting in a hotel room with a glass in one hand, two brownish drops in the bottom of the glass, a dark night and street noise and a good soul on the bed there, near me, leaking away.

When Janet woke up I suggested a room-service dinner, but she said she was feeling strong, she wanted to go out. She was using the oxygen on and off. We called down and asked the concierge to recommend someplace exotic and not too dressy and we ended up taking a cab to a Ukrainian restaurant on Thirty-fourth Street. There we had bowls of bloodred borscht with dollops of sour cream floating in them, and then small dumplings in a thin sweet sauce. Janet ate almost none of her soup, and only two dumplings. She sipped from a cup of tea, took some hits of oxygen. I ate everything in front of me and then everything that was left over in front of her. I drank a glass of straight vodka and then two more.

“Are you getting drunk, Jake? I don’t mind if you do. Are you a mean drunk?”

“Goofy.”

“When’s the last time you were drunk?”

I thought, immediately, of lying to her, then caught myself and said, “September 11, 2001, beginning at about four o’clock in the afternoon.”

“When you knew Giselle was dead?”

I nodded.

“And then you gave up sex for a year?”

I nodded again. The couple at the next table looked over at me.

“And she wasn’t the love of your life? Brutal honesty.”

“No, she was not. Do you want me to say who the love of my life is?”

She smiled in a way I hadn’t seen her smile in two weeks, and shook her head.

I ordered one more vodka with dessert. My head had begun to shift and shimmer—it wasn’t a bad feeling. But beyond that I felt as though something, some immensely heavy grief, was being laid across my face and ears, fine thin layers of dense wet black cloth, one upon another. The waitresses wore paisley kerchiefs around their hair and short skirts, and ours came with the last vodka and the teapot on a tray beside one thin slice of fourteen-dollar white chocolate pie with a boysenberry sauce.

“Ukraine is famous for fourteen-dollar white chocolate pie slices in boysenberry sauce, you know,” I said.

Janet had two small bites. Even in her best wool sweater with her hair brushed, she looked like a woman who belonged already to another world: eyes and cheeks sunken, skin ashen, shoulders thin. I reached across the table and put my hand over her hand.

She put her fork down. “I’m being melodramatic,” she said, setting the oxygen aside as if she would never pick it up again. “I’ve been pretending it’s our last day on earth.”

“It isn’t.”

“Don’t spoil my little fantasy.”

The noisy room tilted, righted itself. The waitresses’ legs kicked past as if they were swimming there, upright.

“I’m pretending we’re in Paris.”

“I’ve always wanted to go.”

“I went once, between college and grad school. I was sitting in the Louvre when this truly ancient man sat down beside me and struck up a conversation.” She coughed, swallowed, took one careful breath. “He was Paraguayan, probably four and a half feet tall. After a few minutes he said, ‘I would like to paint you’—dramatic pause—‘in the nude.’”

“Hope springs eternal,” I said. A fresh wave of drunkenness rolled over me.

She nodded.

“He had nothing to lose. He thought he’d give it a shot.”

She nodded again. “I said no three times. He kept asking.”

“His mother told him never ever to give up,” I said, and her eyes filled right up, and my eyes filled right up, and I couldn’t get a sound out then, though I tried and tried.
Don’t
, I wanted to say.
Not yet
. But every time I tried, another little squirt of juice came up in my eyes and we were looking into two different blank middle distances, southern and western Ukraine, twin epicenters of the universe of suffering, the remains of a slice of cake between us.

W
E TOOK A CAB
most of the way back, then got out and walked, holding hands, along half a block of cold Manhattan night, me with my head spinning, Janet wheezing away and refusing to use the oxygen, and a circus of Christmas lights and window decorations all around us.

Up in the hotel room it was clear there would be no love-making that night—she barely had the strength to take off her sweater and clip the plastic tube under her nose—but we left the light off anyway, as if to remind each other of the pleasure we had taken from each other’s bodies, or to pretend we might take pleasure like that again. I drank three glasses of water and swallowed two ibuprofen. We took turns pissing and brushing our teeth in the dark, then climbed into the luxurious bed. She squeezed my hand once and fell asleep.

It wasn’t completely dark in the room. A thin yellow-gray light leaked in around the sides of the window drapes. The bed spun gently. When I knew Janet was asleep, I slipped my arm out from underneath her, but I lay on my back against her bare warm skin, listening to her breathe. Without meaning to, without wanting to, I started thinking about Giselle. She had tried to call me from the plane. When I came home that Tuesday afternoon, I was already just about sure she was dead—I’d called her parents. I was a big bursting bag of feelings; everyone was, that day. I hadn’t eaten since breakfast. I walked into the apartment and saw the red message light on the phone machine blinking. Eight calls. The second message was full of static and commotion, and my name spoken twice in a panicky whisper: “Jake…Jake?” I listened to it over and over and over, thirty times probably, then I went out the door and walked to the nearest bar, sat there with the television going and got stupefyingly drunk.

I put my hand on Janet’s bare leg. Sirens wailed in the street. I thought of my father, who had loved his work, loved the process of solving problems, “the business of business” he used to call it, the satisfaction of matching up investors and entrepreneurs. He smoked a pipe, he sat out on the patio, he loved to talk about it with me once I’d gotten past the stupidities of my early teenage years. “Jakie,” he said more than once, “the mistake some fellows make is they see a problem—let’s say it’s a bad problem, an almost unsolvable problem, a client over-valuing his business, let’s say—they see this problem and they either throw up their hands and surrender, and walk away from it, or they rush in like novice firemen with hoses spraying every which way. Sometimes, though, the thing to do is to sit back, hold back. You watch for a little while—sometimes it’s only sixty seconds in a heated meeting, sometimes it’s a day, a week, a year—you ponder. Occasionally it is a truly unsolvable trouble and you have to be mature enough to accept that. But usually, if you just let your mind scamper around outside the fences for a while, you see one small action you might take—a word, a shift in tactics. You tug on the knotted-up ball of string, once, here, and things begin to loosen.”

T
HE NEXT DAY
the sky was perfectly blue between the skyscrapers, and Janet was exhausted, but glad that we’d come. I took three more ibuprofen at breakfast and pondered and waited. We drove as close as we could get to the Trade Center, down there in the tight, cluttered streets of lower Manhattan. I waited. I watched the city she loved. And then, in the truck going north, I decided to say one thing to her. I said, “I’m a big fan of doctors, you know, but I think Doctor Wilbraham is a cold, worthless, stick-up-the-ass piece of horse manure.”

She nodded, almost laughed. That’s all we said on the subject. She slept most of the way back, waking only when she coughed very hard, or to adjust the clip of the oxygen cylinder. We stopped for soup and ice cream in Providence. She coughed and coughed and slumped back in her chair and ate almost nothing.

But when we got back to the hospital and she was in the bed again, and Doctor Wilbraham came marching in and started to lecture her, she held up her hand and made him stop. “I don’t want you as my physician anymore,” she said. “I don’t care if it means being transferred to another hospital, or if it means I just go home and die, I want a different doctor now.”

He puffed and huffed but she didn’t stop looking at him. I could see the steel behind her eyes. After a while, even Doctor Wilbraham could see it.