The Moonlight Sonata at the Mayo Clinic Read online

  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, sand
wich) 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.

  Chapter 4

  THERE ARE TWO OPTIC NERVES, one for each eye. They travel up from the spine and pass through the brain to the eyes. A neuro-ophthalmologist who examined my eyes said, “More brain tissue than nerve.”

  Each optic nerve has its own blood supply, from its own artery branch. Temporal arteritis is an inflammation in the arteries. (It often goes along with the disease Dr. Lowe thought I might have—polymyalgia rheumatica.) Temporal arteritis cuts off blood to the nerve, causing inflammation always, and sometimes instant blindness.

  Trying to get medication to these nerves is a particular problem because of the blood/brain barrier. The brain, to preserve itself, keeps to itself. Only certain sizes of molecules are allowed through the capillaries that feed the brain, to keep bacteria, in particular, from entering the body’s central system. But there are certain bacteria that “cross” the barrier—syphilis bacteria, for example, which cause the delirium that characterizes the late stages of that disease, as well as bacilli from Lyme disease.

  Drugs that open up the blood vessels to the brain tend to reduce blood flow to the rest of the body.

  On the Web site Uptodate, I read, “Optic neuritis is an inflammatory, demyelinating condition that causes acute, usually monocular, visual loss. It is highly associated with multiple sclerosis (MS). Optic neuritis is the presenting feature of MS in 15 to 20 percent of patients and occurs in 50 percent at some time during the course of their illness.”

  Vision loss can be minimal, or the disease can result in complete blindness. The average age of people who develop optic neuritis is thirty-two.

  Optic inflammation can occur with and without pain. I had had none. A blur at the edge of the eye and then … nothing.

  We went through the usual emergency room routine. A nurse led us to one of those little rooms with the shower curtain that are meant to be private; a boy lay on a cot in the hall moaning that he had “gone off the lip.” I waited for the infusion of steroids and tried hard not to think of the blur at the periphery of my eye. They did a CT scan. The emergency room doctor said about the scan, “If there are lesions, that would be a tumor,” and then asked, almost as an aside as he left the room, “Are you a drinker?” I said I liked to have a beer in the evening. My nephew called me out of the blue, and I said, “I can’t talk to you right now. We are at the doctor’s office,” not wanting to say emergency room, and he said later, “You could have told me you were in the emergency room. It is never ‘we’ are at the doctor’s office unless it’s bad news.”

  The CT scan showed no lesions. The blood tests and my SED rate—the rate that red blood cells fall to the bottom of a centrifuge, and the tell-all test for most autoimmune disorders—was normal.

  “Now,” the doctor said, “this is beyond my expertise.”

  The boy in the hallway who had gone off the lip moaned and cried. I realized I had not had anything to eat since breakfast, and the nurse brought me a stale turkey sandwich. And finally the nurse hooked me up to a bag of Solu-Medrol, and it dripped into my vein. One full gram of steroids. Sixty milligrams of steroids is considered a hefty dose; one gram is a thousand milligrams. Prednisone, as I would soon find out, is a blessing and a curse. “You will love me,” Dr. Burks said the next day, “and then you will hate me.” It is a most effective, quick-acting anti-inflammatory drug; and its side effects are legion: diabetes, bone destruction, cataracts, pulmonary compromise, puffed cheeks.

  Vincent was preoccupied with getting the car I had left and forgotten in the parking lot at Dr. Lowe’s office. I was distracted by the reading I was supposed to give that night at Trinity, my church. Both of us were concentrating on things that were very much peripheral because we could not face the reckoning in front of us. I finally called the church office, with the hand of the arm that was not hooked up to the steroid bag, explained my situation, and said something about how maybe I could make it because I hated to cancel things (this is how far gone I was), and the woman who answered the phone—I will never forget her—said, “How about postpone rather than cancel?”

  They tried to keep me in the hospital overnight, to give me another infusion, but my internist, Dr. Babji Mesipam, who had somehow got wind of my presence in the emergency room, intervened and asked Dr. Burks to find out if it was possible to do large infusions every twenty-four hours in her office rather than smaller ones every six hours in the hospital, and when she said she couldn’t find anything against it, he sprung me. “I don’t want her in the hospital overnight,” Dr. Mesipam told Dr. Burks. “She’ll only get sick in there.”

  Chapter 5

  WE CAME HOME. We live in a little yellow cottage near the hospital. We borrowed the down payment to buy our house in the late 1980s. When you imagine life in Santa Barbara, you may picture red-tiled mansions in the hills or beachfront estates, but we are writers with part-time jobs. Patagonia headquarters lies south of Santa Barbara, in Ventura, for the surf, and the real estate there is cheaper, but we thought Santa Barbara would be more cosmopolitan. We’d been living in San Francisco with a short stopover in Colorado, and when we arrived in this beautiful seaside town, we were bewildered when we could not find a place to buy an espresso. (Yes, we were from the Bay Area.) Instead, the stores sold the wares familiar to me from my childhood in other wealthy tourist towns—Aspen, Santa Fe. (My parents, in their searching, found beautiful places right before the rich found them.) The food markets in Santa Barbara were stopped in time. They sold giant bottles of gin, vodka, and whiskey placed very near the checkout stands (a kind of grab and go), and acres of Goldfish, Pepperidge Farm Milano cookies, and Scotties: salt and sweets. This town,
I thought, knows how to drink and snack.

  Our neighborhood must have once housed the working class, in single-wall construction cottages thrown up in the 1920s. It was charming and vulnerable to development: it had short streets lined with cork oak trees and the city’s oldest park, through which ran a creek that had been lined in concrete to prevent flooding—“channelized.” It lay between a hospital that was soon to triple in size and a commercial street with apartment buildings and a trailer park with a bar next to it that had long since given up on a name and simply had a pink neon sign that read LOUNGE. Many of the people we met then called Santa Barbara paradise; I didn’t know exactly what they meant. The weather? Certainly in February, when the rest of the country was suffering ice storms and frozen mud, we had freesia blooming in the rose garden next to the Old Mission. (When we flew out in January from Colorado to talk over whether we wanted to work for Patagonia, our car battery had frozen overnight, and we had to flag down a trucker to jump the car. Patagonia’s owner, Yvon Chouinard, met us at the Santa Barbara airport wearing shorts.) And everywhere my eyes went, I saw beauty. But it also meant to people, I understood, that the inhabitants of paradise had to be buffed and shiny and beautiful. Once I found myself behind the glass wall, I appreciated our neighborhood’s proximity to a less-than-perfect life. You could just give up and relax at the lounge.

  As I walked in the door that night, our house had a forlorn, uninhabited feeling. Even in the state I was in, I could feel it. It had, without my knowing it, turned into a way station.

  My diaries of that winter show an abrupt transition, or no transition at all. September through late October show lists of to-do’s: Figure out how to pay taxes. Sermon: Ordinary Time. Prepare for reading. Patagonia campaigns, a meeting on wolverines, an essay on the Canadian lynx. A field report assigned to a young man who, I note now, died in an avalanche when he was skiing in the backcountry last Christmas. That diary ends with a brief notation regarding travel for a Patagonia conference: Truckee 41 degrees, 24 degrees, snow.