The Moonlight Sonata at the Mayo Clinic (10 page)

I found myself thanking him profusely. After he left, I asked his nurse to give him the copy of my novel I had brought along.

When I called his office to ask for a follow-up appointment, I was told by a cross receptionist that Dr. A did not do follow-ups; he only did diagnoses. I never saw him again. This is common among specialists, as it turns out—the one visit, the “diagnosis” or lack of one, no follow-up, and the vague, noncommittal “report.” (According to
The New York Times
, specialists now outnumber internists two to one.)

I had had faith in Dr. A. I thought he would figure out the problem; that was the role, I thought, of a medical specialist. I thought he would marshal his considerable resources and solve it. But that piece of faith would soon vanish, for me and for Vincent. Several months later, when a friend asked Vincent how things were going, he replied, “She has an appointment with another useless world-renowned specialist.”

We walked out into the clear winter twilight in Los Angeles and down the parking ramp. We had been there three and a half hours. As we passed the birds of paradise, I felt a sense of being robbed of something.

It would take me a long time, almost two years, to figure out what it was. What kept returning to my mind was giving my novel to the nurse. Why had I done that?

As we got in the car, Vincent said, “Do you have to go through
that
every time?”

“What?” I asked.

He looked at me with concern: “What they did to you,” he said. “The eye chart, the dilation, the numbing, the pencil in the eye, those weird colored tests, the residents …”

“I haven’t seen an eye specialist in a while,” I said. “But yes, that’s the drill.” I thought to myself: Why is it the drill? Not so much the eye chart and tests, but the attitude and the numbers of people. The feeling of being a thing to test, not a person to heal.

I asked that question of a friend who is a doctor a few weeks later, and he replied, “Teaching hospitals are set up for the students, not for the patients.”

We drove home to a little trattoria Vincent had wanted to try—the first new restaurant I’d been in since early December—and split a giant, expensive rib eye. The room was brightly lit and full of people, and I felt as if I were living inside a kaleidoscope with my dilated eyes and steroid-filled brain. Vincent reached his hand across the table.

Three and half weeks after “it,” I had no diagnosis. The nerve was actually not back to normal (an MRI would confirm that) but was not noticeably inflamed. I was taking 60 milligrams of prednisone a day. The temporal artery biopsy (for autoimmune inflammation in the arteries) was negative.

Like other people who live a middle-class professional life, I had thought that I could manage to control or contain or overcome almost anything. I had known this so completely
that I had not actually consciously thought it out. And because I have been a working journalist, I knew the power of connection. The person with the power over any given situation, the person with the information needed for the story, was only three degrees of separation, if that, away.

I had tracked down the people who harbored Patty Hearst when she was on the lam, by sitting on a doorstep in San Francisco for three days. I had convinced a juror from the Dan White trial after their verdict to talk to me. (Dan White assassinated George Moscone and Harvey Milk in 1978.) I had talked my way past police barricades and through rioters burning police cars. I knew my way around.

I had found that studio in the Village; a friend knew a friend. At that time I had marveled at how easy it was, how small the circle. I had not fully understood that the circle was small because the circle of educated professionals is small. I had not considered what it was to not have these connections or any way of breaking in. To be, in a word, powerless.

Outside my close circle of friends and family, people seemed to believe that my medical situation could be managed, that all it lacked was information, that what I needed was …

“You should find …”

“Have you tried …?”

“How about …?”

Hanging up from their well-meaning phone calls, I would feel more isolated, more inside the glass wall than I had before we talked. They were trying to
manage the situation
. Things don’t happen out of nowhere. They have a cause. They have effects.

Their response was complicated by the lack of general knowledge regarding autoimmune disorders, not to mention lack of medical knowledge. Autoimmune disease, as Bevra Hahn, the head of rheumatology at UCLA, would later explain to me, is a situation in which the immune system—or antibodies—attacks the body’s own tissue.

In the medical literature, there is an almost literary term for it: “the failure of self-tolerance.”

Dr. Hahn’s research has led her to believe that autoimmunity is a disease of civilization. “The cavemen’s immune system was set on a hair trigger to attack infections, and they were exposed to infections every minute. But we are ‘too clean.’ We are not exposed to infections, especially as children, but we have the same immune system, which is looking for trouble. In autoimmune disorders, the antibodies are in overload; their regulation is wrong.” She went on to say that each of the immune diseases has a genetic component: the genetic predisposition appears, she said, to be contained in the target tissue. Each autoimmune disease—MS, lupus, rheumatoid arthritis—has its own bag of tricks. A friend who has MS put it perfectly: “You never know who is going to be in the guest house tonight.”

Each disease has its own trigger, its own genetic history, and possibly its own code. It has taken Dr. Hahn’s medical lifetime (she just retired at seventy-three) to begin to grasp lupus.

Despite this complexity, the popular culture responds to mysterious illness as if the victim’s personality had caused it. Diseases that have no discernible cause are the most obvious choices. Susan Sontag wrote about this twenty years ago in her revelatory book
Illness as Metaphor
, when there was an actual phrase—“the cancer personality.” Before cancer,
the disease was TB. “Sensitive” people—poets, artists—got TB. Once the bacillus that causes TB was found, that link faded. Now the new diseases vulnerable to the “personality” cause are autoimmune.

We want to have answers, we want to explain how things happen, we want cause and effect. Autoimmune diseases are caused by as-yet-unknown factors that will, in time, be known. But we have so little tolerance for not knowing, for reaching the limits of reason, that we make up stories that will explain, satisfy, put it to bed.

Shortly after I saw Dr. A, I talked to a friend on the East Coast. I knew him fairly well and had told him years before that my mother’s mother, elderly and alone, grieving the sudden loss of her beloved husband, had taken an overdose of sleeping pills.

The morning he asked me what was going on with me, I told him an autoimmune disorder. He gave it some thought, asked me more questions, and then said, “Your grandmother committed suicide, didn’t she? We could think of autoimmune as a form of suicide.”

I did not know what to say. I didn’t know how to get off the line. He wanted an explanation that would … would what? I asked myself as I put down the phone.

My thoughts went back to that first day, when I crossed the street from Dr. Lowe to Dr. Burks. I thought about the doctors and the boys on the street who had sailed past me, and the wall that fell between us.

I had thought that the wall appeared because I felt so suddenly ill, so entirely different from how I had felt hours before. I had thought the wall was my own work, but now I understood that it was also theirs. The people on the street that day, the men and women who called and gave
me advice, the man who likened an autoimmune disorder to suicide were not only not living where I was, they were determined to hold fast against the knowledge that such a place existed, outside cause and effect.
It must be because my grandmother committed suicide. He must have done something terribly wrong. It must be something he ate or drank or did
. Or else? I finally understood. Or else it could happen to them.

My close friends, I saw later, were trying very hard to figure out what to do. They were climbing that hill of sand I had climbed when Jodie’s Frank died. I didn’t fit into easy categories. I didn’t have the flu, for which short-term chicken soup and phone calls would have done; I didn’t (or so they thought) have cancer, for which friends would have to put their own lives, and their own disasters, on hold. I had
something else
.

I was not giving them many clues. I had no experience with being vulnerable, in need. I did not want to be
beholden
. I feared self-pity. When I said something about feeling behind this wall, alone, to my friend Cynthia, she burst into tears. “That I can’t reach you is not for lack of trying!”

The people who had encountered Oz themselves were the most confident. A friend who had almost died in a traffic accident when she was eighteen drove me to an exercise class twice a week so I could keep doing something. She was
there
, a dependable driver, giving hours out of her days. Another woman delivered a special tea to my doorstep every few weeks without knocking or asking to come in. When I finally saw her, she told me that she was operating under a tit-for-tat protocol: when she was undergoing
chemo for breast cancer, I had delivered food to her door, and she had asked me to come inside to shave her head.

“I’ll do the same, if you need it. Or rather”—she laughed ruefully—“some version of it.”

A man from Trinity, who had serious cataracts in both eyes and macular degeneration, made dinner for us, leaving it on the porch with brief, factual notes.

I ran into another woman from church at the farmer’s market, where I had moved over to the side of an aisle to avoid the crowds ravenous for winter squash. Margaret had stomach cancer. We nodded to each other. She stopped beside me.

“Do you,” Margaret said, “tell people the truth when they ask how you are doing?”

I laughed. “Never. I don’t want to watch their eyes glaze over.”

A friend who had survived a blood disorder went with me to several appointments in Los Angeles, sitting in the ubiquitous waiting room, just to keep me company. Another (head concussion) drove down from the Bay Area to stay with me when Vincent had to travel. These people offered no sympathy, gave no advice, used no vacuous expressions. They did not tell me to think positively. Even the churchgoers never, ever mentioned “God.” (The clichés that are possible when you use the word
God
are infinite.) In Oz, all that had been stripped away. But the people were not at a loss for words. They chose words that were spare, precise, laced with dark humor,
real
. There were no long-lasting prescriptives. Debbie, from Houston, an American Baptist, left a voice message: “I am keeping you in my prayers. Not that that is going to make you better, but I certainly hope it’s of some help.”

I felt with them as if we were holding each other up in a tenuous circle, arms around each other. We were making it up as we went along.

About a week into the New Year, which had passed unnoticed—everything was now dated from December 1, 2009—I was at the gym for the first time since “it,” attempting to exercise, afraid to be on an elliptical trainer for fear of jolting the eye and thus was on a treadmill just walking dully along. I had situated myself next to a window so I could see a tree, a magnolia, which I watched rather than the TV. The world was what I wanted to see. The magnolia had large polished leaves and those huge, almost false white waxen blossoms. I was looking at the tree when something caught my eye,
caught my eye
, beneath it. It was a person, walking up the steps at the base of the tree to a low wall, where she sat down. She was talking, or her mouth was moving. A tall man followed her, but she seemed not to be talking to him but rather to herself. He was watching her carefully. From the way he was attentive to her, his head cocked toward her, the distance between them (not too close but not too far), I figured he knew her. Was she talking to him? I could not tell. Her clothes were shabby: a red sweatshirt over a shapeless black skirt. Leggings. Gray running shoes. The layers of a homeless person, the body as a suitcase. I watched them off and on until they both got on a bus.

One night I watched a youngish couple walk in the door of our favorite Italian restaurant. We were sitting in the middle of the room, having requested a table near the window where we always sit, and having been told that the
table where we always sit was reserved. I had been irritated by this. The couple came in the door, and my eye rested on them. She was holding tight to his arm, and her head was tilted at an odd angle—I realized finally that she could not see out of the center of her eyes but was trying to see out of the periphery. She could not have been more than forty. He was careful, but not condescending, as he led her to the table, our table, by the window. When they were seated, he moved his chair so he was sitting beside rather than across from her and led her through the menu.

I touched Vincent’s arm.

He said, “If we couldn’t have the table because of them, that’s okay.”

“Always,” I said.

In a new ophthalmologist’s waiting room, I watched a tired woman with a cane and a worried frown walking in. My eye caught her before I realized she was a woman I knew, a local judge and an Episcopal priest, who had been diagnosed, at just about the same time my affliction befell me, with stage-four melanoma.

I did not want to let her know I was there. I did not want to talk to her. I did not want to be that close to the thing that hovered over her. But I knew just before it happened that the nurse would call my name, and I’d be exposed. She did, and Colleen looked up. I walked over to her and said, “When this is over, may I join you?” and she said yes. Her eyes looked weary, as if she were looking at something over my shoulder. She smiled. When I came back, I sat down next to her and rather than feeling awkward, rather than worrying about what to say, I felt my way along what was, now, a familiar rope. Her disaster was much bigger than mine, her country far away, but we had things in common.
We talked in low voices about the endless waiting rooms, the doctors, the protocols, the search. She had found a doctor she liked in San Diego finally, who had gotten her into a new trial, the fourth she had tried, and it seemed to be working. The tumors were shrinking. But she and her husband were working on the “bucket list.” They would soon travel to London, just to see it again.