The Moonlight Sonata at the Mayo Clinic (3 page)

At my own church, Trinity in Santa Barbara, Mark Benson, who had lost his partner to AIDS, said he had asked a priest where Phil was, and the priest had answered him with “a hackneyed Christian line about where the dead go. I think he quoted some line from scripture. It meant nothing to me. I realized later that I needed the priest to enter
into poetry because that is where Phil is. He could have said, ‘Well, Phil is at the zoo now.’ Something that would clearly express the fact that Phil is gone, no longer literal, not here, not visible, but not absent, not without influence, not dead.”

In New York, at an Episcopal church on Fifth Avenue, a woman said that when a friend’s son committed suicide, she told the sky.

At a yoga studio, also in New York, a teacher said, “It’s a struggle to find God. Some people have a kind of heart for it, but for most of us, it’s a struggle. It’s a struggle for me.”

Sometimes people told stories that were a little too
Bible Stories Illustrated
to be quite believable, or too New Age—sunshine and ocean waves. But if you gave people enough time, the cant wore off, and the individual experience came through, often with its own ragged edges.

Once I had been to the museum in New York, I recognized what they were. Pieces of
derroteros
. Fragments of coastlines.

At the same time, texts found buried in Egypt in 1945 were finally fully translated. They dated, scholars thought, back to the second century. They are called the Gnostic gospels. Someone named Thomas wrote one that is completely different from the tone of Matthew and Mark and Luke and John. Thomas is a Zen teacher: very pure, without story. Someone named Mary wrote another, and another was written by an author named Mary Magdalene. These new gospels were discussed in some of the churches I visited, but their relationship to the four Synoptic or “certified” gospels (Matthew, Mark, Luke, John) was not discussed. And to imagine that one of them might be read on a Sunday in place of one of the four—that was really not
discussed. They lived in another world, that of academic research.

Priests and ministers partially appreciated the stories told in small groups and partially condescended to them. Or what felt like condescension may have been more like confusion. The church, including me, didn’t seem to know exactly what to do with them. They were the church you can’t see. But they stayed with me. What I did not understand was how important they were.

One day I woke up and saw the connection between the Gnostic gospels and the stories I was hearing on the road. The Gnostic gospels were old. The stories I was hearing were new. But they had something big in common: they were witness accounts. “I saw,” they said. “I encountered.” “I understood.” And while the Gnostic gospels were old, they were new to the church. For two thousand years, the church had relied on an approved pool of stories, the four Synoptic gospels—reliable and valuable but limited. Inside the walls of churches they were read out loud Sunday after Sunday. These new stories—the Gnostic gospels and the stories people told of their own encounters—were free range. Now what?

There was much to be said for what I saw and what I heard when I traveled, but I was missing something I did not know I was missing until it came back to me. Part of it was a particular kind of pleasure. I didn’t taste my (always organic) carrots or leeks, as I ate them quickly while I made lists of the things that had not happened yet. I didn’t see the tree, a beautiful Norfolk pine, in my backyard as I ducked to cross under its bough on my way to my office to write
a talk or a homily or a chapter. I was not here when I was here. I was always in the world of the things not happened yet, binoculars fixed on the horizon.

Part of what I missed was something that remained nameless. I was numb in an area that was without a name. I was numb, and later, I would be raw.

I couldn’t imagine stopping: when a friend said she was taking a Sabbath on Saturdays, unplugging her phone and Internet and not working and not shopping, my mind went completely blank and I asked her what she
did
. “Sometimes,” she said, “I make jewelry. Sometimes I dig for potatoes. And sometimes”—here she paused—“I nap.”

And like the rest of you, I lived in the United States of America in the year 2009, and I was overloaded. I have a husband who cooks and shops and cleans, unlike so many women, but I was still full of lists of things that needed to be done: the refrigerator was failing, the water heater was too old, termites had found their way into the floor near the dining room door. Our cell phones needed upgrading, our laptops were ready to explode, our garden was overgrown. The godchildren called: a girlfriend sounded unstable, a job hunt wasn’t working, a marriage was proposed. Everything and everyone needed time.

I was sitting on a train talking on my cell phone to a close friend when my husband texted me, asking if I wanted to meet him at work or ride the train all the way home, and I felt as if my brain were going to divide into two halves and fall apart, like an overripe melon. I texted him quickly, “Will ride train,” and then apologized for my abruptness, and he texted, “Sorry. U have 2b on top of everything.”

I had 2b on top of everything.

Even when I didn’t need to rush, I rushed. I fast-brushed my teeth, I washed the dishes so fast I dropped them, I threw laundry in the direction of the washing machine, my mind working on the things not happened yet.

A friend asked, “Why are we all in such a hurry?”

Books with advice about slowing down or living in the moment or meditation or prayer were at first attractive, then just another job. I put them down in the bookstore.

I stopped listening to my neck and shoulders that spelled out IN PAIN. I registered that I was tired and pushed on. When Vincent’s father died in August, my grief slowed me down but, I confess, not for long. In September I turned sixty. There was more of my life behind me than in front. How was I to “spend” my life? But I did not ponder these things: I thought of Carissa at the window in New York and said to myself,
Let’s do this forever
.

In Santa Barbara that November, planning to leave for New York, then to attend my father-in-law’s memorial at a historic mining town outside Reno where he had loved to amble and record history, and then to spend Thanksgiving in San Francisco with Vincent’s family, I lit the paper and kindling, sat back on my heels, and noticed the blur at the edge of my right eye. At the periphery. Very soon afterward I drowned.

I
IGNORED THE BLUR
. A few days later, feeling better, I got on the plane to New York, spent ten days in the apartment with Vincent, learned how to take baths in the kitchen, came back to California, boarded a plane for Reno, spread Vincent’s father’s ashes in the cemetery of Gold Hill, came home, and then drove to the Bay Area for Thanksgiving.

When I got back, I figured I had time, so I made an appointment with Dr. Lowe for December 1.

Our house is only a few blocks from the only hospital in Santa Barbara and its surrounding medical offices, but I drove because I planned to go down to Patagonia to work in the afternoon, and then to a book reading at my church that I was giving that night.

I felt pretty good—a little tired, I told myself, but when I got this out of the way, I’d be fine. I measured out my life, in those days, in “getting things out of the way,” and in the days between travel, and I had a good chunk coming my way. I checked in. I asked Susan, the nurse/receptionist, about her two cats. I knew about Susan’s cats because I saw Dr. Lowe every three months for a checkup of an inflammatory disorder, uveitis, an inflammation of the uvea, the jelly part of the eye. I have had this disease or disorder for over twenty years in the right eye, with inflammatory episodes
occurring sometimes three times a year. An underlying cause had never been found. I have a scar on my right macula from an early inflammation that causes letters to curve and crush together at the end of the eye chart. Thus I can’t really read or write with my right eye. Thus I have, not to put too fine a point on it, only one “good” eye. In September 2009 I had seen Dr. Lowe, and we had both been pleased to see no evidence of inflammation.

I read the eye chart. No change from the last time I’d been there: 20/20 in the left and 20/25 minus 2 in the right.

They dilated my eyes. Susan checked the pressures. They were normal.

In about fifteen minutes Dr. Lowe, a lean Chinese American man whose uncle is a surgeon in Beijing, greeted me, swung into his chair, and asked me to put my chin on the lip of the slit lamp and look at his right ear. Then he put his eye to the lens.

The first indication that something was wrong was the length of time it took him to speak. He’s a thorough man, I told myself, and waited. Then Dr. Lowe, his eye still fixed at the lens, said,

“Darn.”

I half-heard him. Half of me registered that he had never said that particular word before to me, not even when there were cells in the vitreous indicating inflammation. The other half of me was rushing around like an anxious nurse, smoothing the bedcovers, restraining the patient, trying to make everything normal.
So he’s never said that before
, this half of me said.
It just means you’ve got some inflammation. Eyedrops, and it’ll all be gone by Christmas
.

He switched to the left eye and made a careful examination while my shoulders tightened. He sat back. He
pushed the instrument aside. He said carefully: “You have an inflamed optic nerve.”

What I knew then about optic nerves you could have put in a stamp box, but the tone was the kind you don’t want to hear from a doctor. And the words
optic, nerve
, and
inflamed
were enough to get anyone’s attention. The events that followed are all shoved together in my memory, some of them collapsed and bunched and some stretched out, the first indication that I had entered another geography where the ordinary rules (gravity, time) did not apply. I can’t retrieve a normal sense of the day. I must have asked him what he meant, and he said, “Just a second. We need to take some pictures.”

He left the room for a few minutes, and I sat in the large examining chair while my mind attempted to grasp the words. But my mind, as it turned out, was not capable of actually “grasping” what had happened. My first feeling that things had changed was that the examining chair felt too big. It had always been too large for me—I’m five foot four and a half and had dropped to 116 pounds. (I thought I was suddenly effortlessly able to eat anything and not gain weight; I did not understand that the weight drop was part of an illness.) I felt as I had as a child sitting in a dining room chair at my aunt’s farm in Wisconsin, where my feet could not touch the floor and I had to hop down to leave the room.

I wanted to jump out of the chair and run out of the room. I wanted, as I thought about it many months later, to get away from my optic nerve.

The weird feeling of wanting to remove oneself from the self, or from the thing that was wrong with the self, would crop up, in different disguises, over the next year.
But when things got really scary, I didn’t want to view what was wrong as a thing to be battled, overcome. The ads for Sloan-Kettering, “Dear Cancer, Good try,” did not appeal to me. I understood even at the beginning that the metaphor of battle wasn’t right for me.

Dr. Lowe returned and asked me if I had a stiff neck and shoulders, and when I said yes (thinking,
Who doesn’t?
), he looked triumphant and said, “Maybe we’ve found the cause of the uveitis after all these years.” He rushed out of the room again, then returned with a copy of a paper on “polymyalgia rheumatica with temporal arteritis.”

“Here,” he said, “you can read this later. But first”—and he called to the nurse—“let’s get a visual field test and some pictures.” Then he asked me, “Who is the rheumatoid doctor you are seeing?”

I told him Dr. Burks. (A young, slender woman. When we were finished with my exam, we’d talked about clothes.) Dr. Burks and I had decided a few years ago, I told Dr. Lowe, that I didn’t have to see her every year for tests. Nothing had showed up. Maybe every other year, we had said. Dr. Lowe said he was going to call her. “You need some”—this phrase jolted me
—“intravenous steroids.”

I walked down the hallway and into another room, where I sat in front of a large box and put my chin on (another) platform. Susan handed me a clicker. She placed a black eye patch with an elastic band on the left eye, the good eye. I was to stare into the box, my focus fixed on a light at the center, while lights went off randomly at the periphery. I was to keep my eye on the light at the center and depress the clicker when I saw a spark of light at the edge.

I saw the dark patches on the sheet as it fed out of the
machine. Very dark blotches on the lower right of the right eye. A blotch at the upper right. A stain near but not in the center. Dark areas near my nose. These were the areas where the lights had gone off and I had not seen them, the first test to verify damage in the peripheral vision. I turned away from it. Dr. Lowe walked into the room and read the results. He said (practiced, gentle): “Do you understand that this damage is permanent?”

“No,” I said.

I walked down the hallway to the photo room, and certain details caught my attention—the mind wishes to place itself anywhere but where the disaster lies. The carpet was wearing thin. A woman sat in an adjoining room calling someone, her daughter? To meet her for lunch. What was the name of the place near the hospital? she asked.

Then I was very suddenly in the little room with the fluorescein machine. They would shoot dye into my vein and then photograph my eye just as the dye entered it. I held my arm out for the IV needle, and Susan put it in, placing the tube of dye on the table beside my arm. Dr. Lowe walked in, asked if I was ready; I placed my chin on another platform and stared straight ahead at a camera. Dr. Lowe attached the tube to the IV needle and let the dye in. He shot photos of my eyes, one right after the other, the camera making a loud clacking noise. “Doing great,” he said. “Just a few more.”