The Moonlight Sonata at the Mayo Clinic

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 Thanks-giving.

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 under-lying 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.”
He showed me the photos of the nerve. A stalk with a head, partly flared out. It was like a dandelion, I thought—-part of it had gone to seed.

He left me there for a minute or two and then came back in the room. “I can’t seem to reach Dr. Burks,” he said. “Do you know where her office is?”

“Yes,” I said.

“Do you mind walking over there?” he said. His tone was urgent.

I would repeat the story of the day over and over in the next weeks and months, not knowing half the time that I was repeating it, or that I had already told the person I was telling it to, and not realizing until very late the next year why I had to tell the story. To try to make sense of it. How I got here.

I put on a pair of the dark glasses they give you in eye doctors’ offices that make you look like a clown and walked out the door. As I crossed the street to Dr. Burks’s office, a group of doctors walked past me toward the hospital. It was, I realized, now noon. My appointment had been at nine in the morning. I had been, therefore, in Dr. Lowe’s office for three hours. A couple of kids whizzed by on skateboards in front of me—just normal kids—-but I drew back from them, as I had seen elderly men and women retreat from what was for them sudden danger.

Then I had an uncanny feeling of being behind a glass wall that had slid down out of the sky and separated me from the rest of the people on the street. There they were: walking, skating, eating, opening a window, oblivious. There I was. Carrying my eyes.

We were in different countries, separated by this clear, transparent wall. I could have tapped it, the way the man did in the old Colgate commercials.

The doctors and the boys on the street seemed to be moving faster than normal. They sailed past me because they had somewhere to get to. I knew this, because I had been them, three hours before.

My thoughts about the future, the things not happened yet, my ambition, my lists, my talks—gone. I had one goal: to get the steroids into my vein.

In the very early days of uveitis, I had had to think about, here is the word, blindness; I had read the statistics, looked up the studies. But as the years went by and Dr. Lowe and I dealt with it, I had gradually let that fear fade to where it is for most people, not on the horizon, not a possibility.

What came to my mind, as I walked toward Dr. Burks’s office, were the lilacs in Abingdon Square in the Village in New York, the way they were bunched into dense deep purple clusters and then suddenly, overnight, broke out into tiny lavender blossoms. And then, unbidden, I thought of the evening I was walking near Madison Square in New York fretting over some minor offense, when I looked up and saw that the winter sunset had lit up the gold spires of the MetLife Tower and the New York Life Insurance building. A trio of young men on bicycles stopped for the traffic light (probably a one--time event), and they all looked up just as I did, and one of them glanced over at me and smiled a wide grin and said, “Oh man.”

As a child in New Mexico, I had been invited to piñata birthday parties. They hung the paper bird or star from the ceiling or outside, and then we kids took turns swinging at it with a baseball bat. Pretty straightforward. Only before you took a swing, they put a blindfold over your eyes.

I remembered the way the room, full of kids and adults and candles and cake, suddenly disappeared when an adult put the cloth over my eyes, and the disorientation of not only walking but swinging without being able to see. How my body disappeared. I did not allow myself to go any further with these thoughts. I had seen the dark patches on the visual field. The areas looked like puddles of dark water, and like pools, they could spread. Dr. Lowe had said, with relief, “Still on the periphery. Not in the center.”

I walked up the sidewalk to a little brown--shingled cottage that Dr. Burks had made into her office and tried to open the door. It was locked. Confused, I finally read the sign on the door that said they were closed for lunch, and then I did something I have never done. I slammed on a doctor’s door with my fist until a brown--haired woman wearing a white lab coat opened it. I explained the situation—my manner must have alarmed her. She went to the back of the office and returned with Dr. Burks, her blond hair cut to her shoulders, her fine-boned face a trace older. She was holding half a sandwich in her left hand with a bite taken out of it and fiddling with a small electronic thing in her right.

“My pager,” she said to me, and tried to find a place to put the sandwich so she could shake my hand. “Something must be wrong with my pager.”

The bite in her sandwich was the first article of what would become a collection. Next, the rumpled suit of the neuro--ophthalmologist at UCLA; the linted overcoat hanging on the hook in pulmonary at the Mayo Clinic. My eye went to the flaw in them or at least the part (bite, teeth, sandwich) that announced they were human, these . . . ​high priests of the country I now lived in.

What I didn’t know until late in the game was that my little collection of human frailties in doctors was my way to counteract my automatic response to them.

“Why do I forget what I want to ask them?” I asked an acupuncturist who had been an MD but had left “Western medicine.” “Why do I leave the room in a daze?”

“Witch doctors,” she said. “That’s the origin. You become semihypnotized in their presence. You can’t help it.”

This was the start of what I later identified as “the problem.” Or one of “the problems.” I wanted them to know everything, so they could cure me. I wanted them to be witch doctors. As time wore on, I discovered that they did not know everything, but many of them and a good part of me clung to the fantasy that they did.

Dr. Burks asked me to wait for a minute. “I’ll call Dr. Lowe,” she said. “I’ll be right back.”

I sat down in the waiting room.

When she returned, she said, “I can’t do the intravenous steroids in my office today. I am sorry. I have to send you to the emergency room.”

Get a blood sample first, she said, handing me a sheet for the lab.

The emergency room was just down the block, but of course it meant that I would join the very sick, the bleeding, and the accident victims, and like many emergency rooms, it would be full of paperwork and understaffed, and getting out of it would be like getting out of jail.

As I walked through the double doors, a man wearing a bathrobe in a wheelchair was blocking the path to the reception desk. Beside the nurse at the desk was a man with his face screwed up in pain, speaking a language I had never heard, while three staff people were trying out all the languages they had among them on him. Right behind me, a man walked in with a bunch of grocery store red roses and said loudly, “If she’s still breathing, that’s all I care about!”

Vincent arrived as I sat there in a little plastic chair inside the emergency room door. I had waited and waited for him and had not known I was waiting for him until he walked through the double emergency room doors, and I started to cry.

He sat down and took hold of my left hand, and at the same time a nurse placed a bracelet with my name and date of birth around the other wrist.

“We have you in the system,” she said.