The Moonlight Sonata at the Mayo Clinic

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.
RC
182.
S
14
G
35 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

        
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

T
HE 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 crossing 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

I
N MID
-N
OVEMBER
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.”)

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