Silent Partner: A Memoir of My Marriage (4 page)

My most indelible memory, however, is not of the revolution or even of long, pleasant days at the beach, but of a day that would change my family’s life forever. I was about six, and my mother was riding home on her bicycle from visiting someone in town, with my brother Paul, then two, in a seat on the back. Somehow he got his foot caught in the spokes, causing the bike to fall over. In the moment, the spill seemed unremarkable. My mother got herself and Paul back on the bike and headed for home. But that would be the last untroubled day my family would have for many years.

That night Paul was in pain, crying and unable to sleep. Within a few days, his left thigh had become grotesquely swollen and his veins blue and bulging. His leg looked like the leg of an old man. There was no improvement in the days that followed. Our family doctor didn’t know what was wrong, though he saw Paul and examined his leg several times over the next couple of weeks. It wasn’t a break. It wasn’t a sprain. Maybe a torn ligament? No one really knew. But Paul was in constant pain, and he limped as he walked. My mother was distraught because she felt so responsible. She believed that it was cancer and that he would die.

No parents can stand to see their child in pain; thus my mother and father began a journey to find out what was wrong, using all their resources to do so. They took Paul to specialists throughout Portugal, but none of them could diagnose what had gone wrong. Meanwhile, Paul’s continuing pain became unbearable, for him as well as for my parents. After nearly three years of doctors not being able to explain, much less correct, his problem, my parents decided to take drastic action. Believing American medicine to be the most sophisticated in the world, they decided to move us all across the ocean. Had that bike never toppled, my family might well be in Pocarica to this day, but circumstances had mobilized us, and we were more than ready to go. So in July 1975, when I was eight and a half, my family left Portugal for the United States, landing at Newark Airport and settling a few miles away, in the Ironbound section of Newark, in my uncle’s multifamily house.

Compared to the rest of Newark, my new neighborhood seemed more a small town than a large city, but it was enormous compared to Pocarica. Though the Ironbound was, and is, famous for its Portuguese restaurants, and though almost half of my classmates were Portuguese, the neighborhood was, in fact, ethnically diverse, with most of the rest of the residents being Italian and Irish. For a child it was a manageable neighborhood, largely residential, with even the commercial buildings rarely higher than two or three stories. Anyplace I needed to get to—my school, my church, the shops—was not more than a few blocks away. My school was on Wilson Avenue, right in the heart of the Ironbound section. In the summer we went swimming at the bathhouse right next to the school. Our church, Our Lady of Fatima, named for the famous appearances of the Virgin Mary in Fatima, Portugal, was a short walk from my home as well, and that’s where my Girl Scout troop met. My father could walk to his job at Newark’s Penn Station, and my mother could walk to hers, at a grocery store and gift shop she owned. Later on, in eighth grade, when I was old enough for a part-time job, I would find one at a nearby gift shop on Ferry Street.

When I arrived in this country, I spoke no English at all, but after a summer with my cousin and friends and neighbors, I had begun to learn a little. Still, my first day of school in the fourth grade here was very frightening, especially after the formality, silence, and order of my school in Portugal. My new classmates seemed rude and unruly and out of control. I felt so out of place. I was more formally dressed—frillier and far more starched and ironed—than my American classmates. I sat quietly and kept to myself, especially in the beginning. I was most comfortable in the few ESL periods I had each week, which sped up my acquisition of English. Thankfully, in a neighborhood with a large Portuguese population, many kids also spoke Portuguese, and some of them translated for me. Within months I could pretty much follow what the teacher was saying. By fifth grade, I’d hit my stride, and by the sixth-grade open house my teacher told my mother (with me acting as interpreter) that I was one of her best students. I was still one of the quieter children and didn’t ask questions or raise my hand to answer any unless I was sure I was right, but I was also aware that the teacher called on me whenever she wanted the correct answer, even if I wasn’t raising my hand. However quietly, I was proud of myself.

As is the case in immigrant families everywhere, my brothers and I learned the language of our new country more readily than our parents did. In fact, my mother and father didn’t want us to speak English at home, so we spoke to them in Portuguese and with each other in English, which meant we could have conversations right in front of them that they couldn’t understand. On the other hand, later on, my mother wasn’t above seeming in the dark when we spoke English to each other, though eventually we suspected that she understood far more than she let on. I guess she figured she could find out more about us that way.

My parents wanted to be sure we would know about Portugal and were fluent in Portuguese, so three evenings a week they sent my brothers and me to private lessons in Portuguese grammar, history, and culture—which we all hated. It would have been more fun to go to Portuguese school with our friends (our teacher, Mrs. Idalina, was stern), but my mother thought the kids there fooled around too much. She wanted Portuguese school to be a no-nonsense endeavor. The purpose was to learn, not to play.

Our church was only a few blocks from our home and was important to us. The big event was the annual three-day Feast of St. Anthony every June, and two dozen or so parishioners were on the fund-raising committee, raising money to cover the church’s contribution to the festival. That committee included my father, who played the trumpet in the church’s marching band, putting on his blue uniform with the gold trim that made him look so handsome. A “daddy’s girl” right from the beginning, I wanted to go where he went and do what he did, so I accompanied the band during their performances, much later on getting a blue uniform of my own. I also became a member of the fund-raising committee, probably one of the only members who wasn’t somebody’s father. My dad joined out of a sense of community, and though I initially joined because he did, I stayed on for about ten years because I just loved counting money!

By the second year, I had it down to a science. When we got home from fund-raising in our neighborhood—several blocks on a Saturday or Sunday afternoon—I raced ahead of my father into the kitchen and climbed onto one of the kitchen chairs. My father, amused at my eagerness, walked behind me, carrying the canvas bag in which we stowed the day’s collection.

“Give me the bag! Give me the bag!” I said, in Portuguese as always.

“How about ‘please’?” he responded with a smile, beginning to clear off whatever was on the table.

“Please can I have the bag?”

My father handed it over and watched as I turned the bag upside down and dumped the contents on the table.

A pile of bills—singles, fives, tens, and twenties—fluttered onto the table, like a pile of dry leaves. There were some coins, too, a few of which, given my hurry, rolled off the table and onto the kitchen floor. I loved counting the bills, but hated counting up the coins, because I hated making those stupid little towers, especially of dimes. I always forgot how many I already had in the pile.

“I’ll do the dollars and you do the dimes and quarters,” I said to my father.

“Well, first we have to pick all the coins up off the floor,” he reminded me.

“OK,” I said, leaping off the chair, picking up a few, and, in my eagerness to get to the bills, leaving the rest to him. He didn’t protest.

First I put all the bills face-forward and right side up. Then I counted. Then I counted again. Then I was ready to announce my total. “Three hundred and twenty-three dollars!” I said. “Are we going to beat what we did last week?” Last week’s take had been $340.

“I don’t know. I’m still counting,” said my father.

“Hurry!”

He just looked at me.

“OK, sorry!”

A minute or two later, he was ready with his announcement. “All right, I have twenty-three dollars in coins.”

Quickly, I did the math. “Three hundred and forty-six dollars!” It made my day—and thus a little fund-raiser was born.

AMID THE ENERGY REQUIRED
to get our family settled in a new country, my parents continued their quest to find a medical diagnosis for Paul. They traveled to various specialists across the country and even back to a renowned doctor in Germany, determined to find out what was wrong, to no avail. Not long after we arrived in the United States, Paul’s condition deteriorated and his leg became susceptible to fracture. The spring I was ten, Paul broke his leg so badly he had to stay at St. James Hospital for three months with his leg in traction. The hospital was only a few short blocks away from our house on Ferguson, so I could visit him every day.

Six-year-old boys don’t generally conduct long conversations with their older sisters, and Paul was no exception, so much of the time I sat at the side of his hospital bed watching TV with him, now and then playing Monopoly or Candyland, or quietly doing jigsaw puzzles together. We were already close, and it just made us closer.

As anyone will tell you, a child with a chronic illness becomes the focus of the family. The impact on the other children in the family is profound, but the way it shows itself will vary from child to child, depending on each one’s temperament. I’m quiet by nature, though fierce when crossed, perhaps because I’ve always been so much smaller than everyone else, the first on line, from first grade to high-school graduation. Given my nature, I could have done a slow, resentful burn or become clingy because Paul required so much of my parents’ attention. But I didn’t. Instead, perhaps because I was the firstborn, I became someone who could pretty much fend for herself, someone who didn’t want, or need, a lot of hand-holding (handy traits if you’re contemplating partnership with a politician). Rather than feel resentful of Paul and the attention he was getting, I might have felt a little guilty—why was I OK when my little brother wasn’t?

It took another ten years or so before we finally learned what was wrong with Paul. He had an inoperable lymphatic tumor in his leg. He could have been born with it, and if not for the fall, who knows what would have happened? Maybe it would have stayed dormant, maybe not. But when Paul fell off the bike, the impact assaulted the tumor. It was like bashing a beehive with a baseball bat.

When Paul was eighteen, he went to a specialist in Delaware and had his leg amputated almost up to the top of his thigh. It was a difficult period for my family emotionally and practically. In my last year of college by then, I took a leave of absence to make myself available to Paul and to my family. There was rehab in Delaware and then physical therapy as he learned to walk on an artificial leg. Thankfully, Paul’s amputation put an end to his physical pain, and the prosthesis gave him back his mobility. But the cost of the leg was exorbitant—almost as much as a new car—and even with medical insurance my family felt it. My parents had many quiet conversations at the kitchen table about this, sometimes including me.

What affects us as children stays with us, often playing a part in what we’re drawn to study or what kind of work we want to do, often with no one the wiser. Paul and I were both very outgoing, and our similarities would have made us close regardless of the circumstances. But his medical problems drew us even closer. I felt compelled to help, as I do to this day. Strange to think of it now, but that’s one of the first things that attracted me to Jim, his readiness to help people.

I worked in a bank while I was in college at Rutgers, and for a while I considered law school, but when, at twenty-four, I got my first real job at St. James Hospital, I knew I had found not just a job but a calling. I had many responsibilities, but the most rewarding by far was to make sure that people in the community knew what health-care services they were entitled to, and actually help them get those services. I might have remained committed to issues such as these, happy to go home every day at five o’clock—but there was more. My parents needed me to help them navigate their way through an interconnected tangle of bureaucracies—physicians, hospitals, medical insurance, pharmaceuticals, and equipment.

For most children family life is a private matter, and it’s a life lived at home. Public life is “out there” somewhere, distinct from private life. But some of our most important and powerful activities as a family took place in the public sphere of hospitals and doctors’ offices, as my parents tried to protect and provide for my brother, and I tried to protect and shepherd them all. Once the usual boundaries separating private life from public life had been, for me, removed—or at least redrawn—the political had become the personal (which isn’t quite the same thing as saying the personal had become the political, though it’s close). Given how I’d been wired and affected by the life I had lived, I became someone for whom a dry position paper on health policy didn’t seem dry. If it shed light on the care of a brother I loved, it was personal and it could move me, maybe not quite as much as a love letter could—but almost as much.

The public and private were mingled for me in yet another way, too. Just as my family lived much of our most compelling private life in public arenas, so the public world came into our home through television. Almost as soon as I came to this country, I fell in love with ABC’s
World News Tonight
. I watched it every single night, with the same zeal other people reserve for their favorite soap opera. Our family’s first anniversary in America coincided with the country’s bicentennial, and on the news that night, when we watched the tall ships sail up the Hudson River, we took their journey personally. That year there was a Fourth of July parade on Ferry Street, the only such neighborhood parade I can recall. By then I knew all about the Boston Tea Party, the history of the American Revolution, and the colonists’ struggle for freedom.