The Moonlight Sonata at the Mayo Clinic Read online

  THIS IS A BORZOI BOOK

  PUBLISHED BY ALFRED A. KNOPF

  Copyright © 2013 by Nora Gallagher

  All rights reserved. Published in the United States by Alfred A. Knopf,

  a division of Random House, Inc., New York, and in Canada by

  Random House of Canada Limited, Toronto.

  www.aaknopf.com

  Knopf, Borzoi Books, and the colophon are

  registered trademarks of Random House, Inc.

  Library of Congress Cataloging-in-Publication Data

  Gallagher, Nora, 1949–

  Moonlight sonata at the Mayo Clinic / Nora Gallagher. —First edition.

  pages cm

  eISBN: 978-0-307-96231-7

  1. Gallagher, Nora, 1949—Health. 2. Sarcoidosis—Patients—Biography.

  3. Uveitis—Miscellanea. I. Title.

  RC182.S14G35 2013

  616.4′29—dc23 2013005858

  Front-of-jacket photograph by Pasieka © Science Photo Library/Alamy

  Jacket design by Chip Kidd

  v3.1

  For the good doctors: Babji Mesipam, Doreen Burks, Robert Wright, Narsing Rao, Clarke Stevens, and Robert Baughman; and for physician’s assistant, William P. Holland

  Contents

  Cover

  Title Page

  Copyright

  Dedication

  Epigraph

  Part One: Drowning

  Chapter 1

  Chapter 2

  Chapter 3

  Chapter 4

  Chapter 5

  Chapter 6

  Chapter 7

  Chapter 8

  Chapter 9

  Chapter 10

  Part Two: Limbo

  Chapter 11

  Chapter 12

  Chapter 13

  Chapter 14

  Chapter 15

  Part Three: Recalled to Life

  Chapter 16

  Chapter 17

  Acknowledgments

  A Note About the Author

  Other Books by This Author

  About suffering they were never wrong,

  The Old Masters: how well they understood

  … how it takes place

  While someone else is eating or opening a window

  or just walking

  dully along.

  —W. H. Auden, “Musée des Beaux Arts”

  PART ONE

  Drowning

  Chapter 1

  THE YEAR I DROWNED, I took the No. 6 train uptown in New York to the Hispanic Society of America to visit their collection of ancient maps. Among them are large maps, drawn by men who were claiming the new world not only for Spain but for Christianity. One had a crucifix at the top, and another was adorned with a Madonna. Still another had a Muslim soldier with a sword on one side of a map of Africa and an armed European on the other.

  The pride of the museum was Juan Vespucci’s map of the world, mappa mundi, completed in 1526. They keep it in a private room available only to scholars who sign up well in advance. I knocked on the door without much hope, but the thin, polite man who opened it said, “Of course,” and let me in. Crowded into a small space were a number of wooden desks with a few people working at them, who looked up, then went back to their books and papers. On one whole wall was an old gold curtain with tasseled fringe, like something you would find in a drawing room. The man drew it back, and there it was: all that was known of the world. Africa very much in place; South America a crooked, narrow knee; North America only a scrap of land, surrounded by watery blurs where all knowledge ran out.

  I was directed upstairs to an exhibit of smaller maps, laid out in glass cases in two darkened rooms. These maps were specific, precise, and individual, drawn by the pilots of ships, “to preserve,” as the curator put it, “the Mediterranean sailors’ firsthand experience of their own sea.”

  They were so carefully and beautifully decorated—castles with flags marked cities, compass roses and fleurs-de-lis were drawn along the edges—they may not have been working charts to be kept on board but beautiful replications of where the sailors had been and what they had seen, what the curator called “subjective truth.”

  Among the maps were practical books and charts called derroteros (in English, “courses” or “pathways”) made by rutters or coastal pilots. These guides, with their close focus, aided mariners who plied both local and more international waterways and provided a bird’s-eye view of shoreline elevations. The journals accompanying the maps had notes on the stars and entries regarding harbors and ports. One particular derrotero was displayed with its original hand-stitched hemp case. It was a painstaking map of a shoreline, with hundreds of tiny inscriptions and notes and small perfect houses drawn along the water’s edge. Only by reading back and forth between different maps was a sailor able to orient himself.

  I walked among these maps, often the only person in the dark rooms. And I began to see that I was navigating between the larger mappa mundi of organized religion and philosophies—Christianity, Buddhism, Judaism, Islam, and not to ignore, the Church of Atheism—big cosmologies with so much history and tradition, and so many power struggles behind them. Firm ideas. Fixed points. And my own derrotero, my firsthand experience of my own sea, my own subjective truth.

  What principally drove the makers of the large maps was conquest; the smaller ones, discovery. My derrotero would be of the smaller coastline, the individual rock. I would draw it to tell others what to watch out for, what I learned. Or what I knitted together, what sufficed. No Essential Truth, but a geography worth recording.

  We know from the work of biochemists that the very material from which life arose was dust blown here from some distant star that we will never see. That the carbon dioxide atoms that surround us today may have been breathed out by a woman or a man who lived here hundreds of years ago. That the world is made of shapes and materials that move and change, things we cannot know exactly but can often only apprehend.

  Our desire to apprehend this world is often couched as a passive state, as Belief, a dumb acceptance. And sometimes I suppose it is. But the struggle to grasp what lies just outside our firm knowledge is in fact energetic. Reason runs out, and we reach beyond it, toward the blur at the edge of the map. And beyond that, toward what cannot be known. And this urgent need to reach beyond ourselves is not “real” until it has been worked through a human life, in its specificity, its particulars. Our lives, our bodies, are its mediums. Whatever the reality of this thing beyond us, the struggle toward it remains, oddly, individual. Like truth, what we sometimes call “faith” is alive. It changes. What drives us, as it drove those sixteenth-century sailors, is discovery. Who knows in the end what we shall find out to be true; perhaps it’s only what we ourselves held to honestly.

  Like crossing a border

  From one country to another in a second.

  This is what I wrote down when I got home. I wrote it in a notebook and then added, There will come a time in my life when the doctor says, “I am sorry. There is nothing I can do.” I know this now, not in theory.

  It was an ordinary day. I had almost not gone to the doctor.

  Dr. Lowe looked at my right eye. He said, “Darn.” And I dropped out of the world I lived in, where I thought I knew about disease and vulnerability and death and all that, and entered another country. It was a spookily familiar world, same streets, same buildings, same people—a sci-fi version of my streets, my buildings, my people—but it was as if the furniture were slightly rearranged, the people not quite right. It was not like another place; it was another country. It was like falling into Oz.

  I walked right over the border without knowing I was c
rossing it. It had no border patrol. I did no planning. I had no map. Dr. Lowe handed me the passport. I had it in my hands before I knew what it was. My ideas about illness and medicine and then “God” would soon be revealed for what they were: tickets on a train that had left the station.

  The man Jesus had had quite a lot to say about losing. He was—now I understand—preoccupied with loss: lost sheep, lost coins, lost sons. His own lost life. The Hebrew scriptures emphasize exile. Islam: the stranger. The Buddhist Noble Truths: suffering. I had understood these sayings as metaphors. Not anymore.

  In the end, I lost three things, and one of them was my faith.

  I crossed Bath Street, parallel to Santa Barbara’s hospital, and headed toward Castillo Street. I was careful to use the crosswalk. I felt the nearness of my own life, its centrality, its concreteness. Even then, early in my sojourn, in what I hoped was only a visit, not my destination, what was brought home to me was that I had taken my life for granted. A group of doctors in white coats was coming toward me, one eating a sandwich, another carrying a folder; a middle-aged woman was talking on her cell phone—all of them just walking dully along as if their lives were not fragile. As if their lives were balloons … not a huge raft that had to be lugged along the sidewalk, a large body not possible to ignore because it … had … something … wrong … with … it. The raft is me. I am it. They are all walking around, nurses, doctors, visitors, on this block, and all over the world, as if their bodies were clothes or whatever, … They are—here is the right word—oblivious.

  I had been there, not knowing that this was my creed, until ten minutes ago. The sick? Not me. The dying? Never. I had thought I knew. I’d had the flu. I’d had a cold. But these were not enough to dump me into Oz. Because I knew that eventually I’d get well. My time in the land of the sick had always been so short, it was like a layover. I saw Thailand but only from the airport. To pass into this place, you have to not know whether you are going to get out.

  Chapter 2

  IN MID-NOVEMBER 2009, five months after seeing those maps in the museum in New York, I was building a fire in our house in Santa Barbara. Outside the weather was cold, but the winter rains had not yet begun. I had a queasy stomach, a fatigue so pronounced, I slept for three hours at a stretch, and I had a dull headache but no fever. I would repeat these symptoms in doctors’ offices in Santa Barbara, in Los Angeles, and finally at the Mayo Clinic in Rochester, Minnesota. I had a queasy stomach. I had a headache. I was very, very tired. I would not say that I was building a fire—an important omission, as it turned out.

  As I knelt on the hearth and leaned in to light the paper and pine kindling, I noticed a blur at the edge of my right eye, as if I had caught a ghost walking out of the room. Just at the periphery. This too I would repeat. “A blur,” I would say, and the doctors or residents would lean toward me. “At the periphery.”

  I did not reach for the phone and call Dr. Lowe. I did not call him the next day. I didn’t know, at that time, how quickly things can go wrong, how fast you can leave the ordinary world. I didn’t know what a blur at the edge of the eye signifies.

  I sat down in front of the fire and resumed reading Wolf Hall by Hilary Mantel, the last book, as it turned out, I would read for two years. The last book I have read, as I write these words.

  My husband of twenty-seven years, Vincent, had left for New York, and I was to follow him in a few days. Both of us are writers, and New York for us, despite its expense, is our place: the world of writing and books and publishing, poetry readings, the dense concentration of friends who are artists and poets and novelists, shoptalk. The overheard conversations on the street. (“They told him, if he is a man, he has to be put in a man’s cell.”)

  For six years we stayed in a studio in Greenwich Village owned by a friend who had moved to Maine, for a month at a stretch, three times a year. Our day jobs in California were part time. We wrote in the mornings—he in the entry hall, me in the main part of the studio—before our colleagues on the West Coast woke up. Our friends charged us very little for what we got, but we still had to make extra money just to live in that city for a month (where, as a friend said, you might as well just throw dollar bills out the window). Vincent wrote catalog copy; I gave talks on my books and taught workshops.

  In that nest we got to know how each neighborhood in New York is its own village. Around the corner from our building was a place called Typewriters and Things. The second time I went in there to buy a refillable pen, the Chinese American man who sold small black notebooks with lined pages and zippered lightweight mesh plastic bags in various sizes—for stray keys and whatever you needed to collect—that I have found nowhere else, remembered not only my name but our address in California. I went into our local shoe repair place—now extinct—and the Italian man who did not speak English sold me shoe trees for new boots. He took only cash, and when I said I didn’t have any and turned to my husband, he said, “È sempre così con le donne.” “It’s always like that with women.”

  We went to New York for the rivers of words.

  One of our goddaughters, who lived around the corner on Bank Street (with a roommate in a one-bedroom divided into two) while she went to NYU, dropped in one night and sat at our high table set in front of the windows. We drank glasses of pale wine and looked south at the Village, a historic district, much of it unchanged since the eighteenth century. Red-brick townhouses with aged vines splayed on a wall. Tarred rooftops. Chimneys shaped like pots. To the west, a watery flash, a sliver of the Hudson. And in the distance, the towers of Wall Street, like a chain of mountains.

  “Let’s do this forever,” Carissa said.

  But after the crash of October 2008, our friends who owned the apartment were forced to sell. We packed up the few things we had contributed—pots and pans, a computer screen, towels and sheets—and stored them in a friend’s basement, hoping that we might someday find another place, then took the Long Island Rail Road to JFK. I cried all the way.

  That November 2009 Vincent was to try out another apartment: a rent-controlled tenement (bathtub in the kitchen) on West 45th Street (where the friend who rented it was once awakened in the middle of the night by a man yelling, “Drug dealer in the building!” as if, she said, it were a public service announcement).

  Part of me didn’t want to go. I was reluctant to get on a plane, partly because I really felt sick. And partly because, I realize now, I had been traveling like a traveling fool, and I was worn out.

  That year, 2009, I had left our house in California so many times I stopped counting. I packed the same suitcase with many of the same clothes. Printed out the boarding pass. Set the alarm. I was recognized as a business traveler. “When you walk in the door of the hotel room,” a friend said, “ninety percent of the time, you don’t have to look: the bathroom is on the right and the closet is on the left.”

  “Are you goin’ out,” a tall man from the South said to me as we entered a Boeing 737 together, “or comin’ in?”

  Miles piled up in my United account. I waited in line with the other Premiers, behind the 1 Ks and the Premier Executives, hoping for an upgrade. I lifted my bag into the overhead bin, nodded to the person sitting in the aisle seat, turned off my cell phone.

  I traveled to Spokane, Sun Valley, Reno, San Francisco, New York, New Haven, D.C., Indianapolis, Austin. Into the business schedule, I packed family obligations. My former father-in-law, in Palo Alto, with whom I remained close, loved a visit. We have five godchildren with whom we like to check in. Vincent’s father was very ill. Soon he would be dying.

  My body was a machine that packed suitcases, lifted bags, printed out boarding passes. My mind knew where the bathroom and the closet would be while it worked on the next trip, the next talk, the next next. I was, as my godson Asa says, “bizzy.”

  In his poem “The Outpost,” about being on patrol as part of his military service, Tomas Tranströmer, the Swedish Nobelist, tries to stay in the present, “to be where I am and to
wait.”

  Instead, he finds, “things not yet happened” fill his thoughts.

  Things not yet happened waited for me, at the periphery, crowding to get in.

  I traveled like this to talk about my spiritual life, but the irony was lost on me. I have published two memoirs about faith and doubt, and a novel about a physicist’s crisis of faith as he works on the atom bomb. My “religion” was neither certain nor fundamentalist (I was, after all, an Episcopalian), but I was a regular churchgoer. I had gone back to the Episcopal Church in my late twenties, having joined it when I was thirteen with my mother. She found an Episcopal church in Albuquerque, St. John’s Cathedral, with a priest who combined a passion for civil rights with fine liturgy. As a teenager, I fell in love with God and Father Kadey at the same time. One of my memories of Kenneth Kadey—a stocky guy with a crew cut—was of him standing on a tall ladder in the middle of the church aisle changing a lightbulb in one of the huge chandeliers hanging from the cathedral ceiling, while talking to my mother about a civil rights protest.

  My mother was what would be called now a “seeker.” She had tried the First Congregational Church, when I was eight or nine, and must have gone to other churches in between then and the time we joined St. John’s. I can’t name what she was looking for, but I can guess. My parents’ marriage took up a lot of space: my father, a lawyer, had been a drinking alcoholic; they separated for a year while we were living in Aspen. (Pretty towns were part of a search for happiness for her and new jobs for him.) Dad went back to Union Grove, Wisconsin, and lived on his sister’s dairy farm that year. (My aunt wore tweeds, played chess by mail, and went to cattle shows in Denver.) A man from AA sat with my dad through the night and day ahead while he suffered the DTs. A year later, after he had worked on an automobile assembly line in Kenosha to make money to bring back to us, my father came home, to Albuquerque, New Mexico, where we waited lined up—my mother, my brother, and I—for the stranger who got off the train.