Roland Merullo - A Little Love Story

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.”