The Moonlight Sonata at the Mayo Clinic Read online

  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.

  Finally I understood that my eyes were going to the vulnerable, the sick, the homeless first now, whereas before I had seen them last. I would say my eyes rested on them now, whereas in the past my eyes passed over them. I gradually came to see that I had been, in my busy, travel-filled life, very much like Ivan Ilyich’s friends, and the people who called me offering advice. I—busy, athletic, healthy—was not like the others, the ones who were sick. It, whatever it was, would not happen to me.

  I was big, unlike them, who were small. I had connections. I had somewhere to get to.

  Now the connections, the power, the places to get to were straws in the wind. I was small. My eye was going to the vulnerable, the small, the people who were like me. The last ones were now first.

  A woman at church made me a prayer shawl. These shawls were hand-knitted from acrylic yarn so you could wash them, then blessed by those who were part of this “ministry.” I had seen them, piled up on the welcome table at the coffee hour in strange bright colors, and cringed. But then Betty Bickel told me she had made me one. Betty had managed to be the stereotype of a churchgoing regular—elderly, quiet, dutiful—but I knew her to be instead courageous, original, and kind. She also makes the best lemon bars. When she told me she had made me a shawl, I practically ran down to church to pick it up. It was blue acrylic. I brought it home and lay down beside it. Junior jumped up on the bed and headed for it. I held on to it with one hand the way children hold their blankie. We both fell asleep. When Vincent came home, he looked at it with some concern. “Betty Bickel made it,” I said. “Oh,” he said, “then it’s fine.” After that we called it, one word: bettybikelsprayershawl.

  “I think it works,” I told Betty when I thanked her.

  And she looked at me as if to say Duh.

  I held on to the prayer shawl as I lay awake in the dark. I thought about the woman under the window at the gym. And then I remembered the story of the blind beggar in various gospels. It is one of those simple, direct stories in the Bible: a man blind from birth begs in Bethsaida. Jesus of Nazareth passes through and, seeing him, takes him by the hand and leads him to the fields surrounding the village, away from the prying eyes of the religious authorities. There Jesus kneels down in the dust and makes a paste out of dirt and his own spit and smoothes it over the blind man’s eyes.

  I had been drawn to the story before I feared losing my sight. I had liked its detail (taking him by the hand, away from the village elders) and the use of those rough materials—dust and spit. And what the man is recorded as seeing is reminiscent of what Oliver Sacks reported people who are blind from birth to see when they are operated on to remove cataracts.

  “What do you see?” his friends ask him.

  He replies, “I see men as trees, walking.”

  The story felt true.

  In the night alone, pondering the story, my interest oddly was not in the “miracle” part. Instead I thought about what it would be like to have a doctor lead you by the hand and get down on his knees. What I thought about in the dark was the fellowship, that old word, of Jesus. Extending his hand and leading this man, unable to see where he was going. At the time of Jesus, illness was thought to be caused by sin: either one’s own or one’s parent’s sin. (The “cancer personality” is not far from this first-century cause/effect.) So to heal someone was more than personal; it broke through a code, a social ostracism.

  Jesus led the blind man out to the fields, away from prying, judging, powerful eyes. And there he knelt down.

  Then, I thought in the night, is this the eye that sees?

  PART TWO

  Limbo

  Chapter 11

  VINCENT AND I DECIDED not to use certain metaphors. Blind drunk. Blind as a bat. We don’t see eye to eye. We used deaf as a bat, until I started to lose my hearing. I made lists of what to ask the doctors, of what I needed to know.

  On the last day of December, Dr. Burks ordered a full-body CT scan. Sometimes, she said, tumors can cause these weird aberrations. In a closetlike room I removed my clothes and “everything metal,” put on a blue-and-white-dotted cotton gown, and presented myself to the clothed technicians. I lay down on the narrow white bed. The nurse and technician left the room and talked to me through a microphone in the machine.

  “Take a breath. Hold it. Now breathe out.” The cot passed me through a large white doughnut. I closed my eyes. It made a noise between a whirr and a buzz.

  The scan report came back. The radiologist noted “emphysema” scarring. He noted a 1.4-centimeter “nodule” in the upper area of my left lung.

  Dr. Mesipam told me I needed to see a lung specialist. I went to see Dr. Robert Wright. His office, like Dr. Burks’s, was just around the corner from our house. He was tall with prematurely white hair, he had an accent that carried a trace of his English Montreal boyhood, and he loved wilderness. We bonded over Patagonia.

  He assured me that I did not have emphysema and was the first to explain to me that radiologists tend to go overboard in their notes. The nodule, he said after a brief hesitation, was not cancer, but they would have to “follow it.”

  “I smoked, you know,” I said.

  “Yes,” he said. “For how long? And when did you quit?”

  I asked him why he thought it wasn’t cancer, and he shrugged and hesitated: “Forty years of practice.”

  Much of me believed him. I quit smoking twenty-five years ago—surely my odds were good. But now cancer, which had not been part of the drumbeat of worry, joined it. On the Internet, I noted, lesions in the lung caught below 10 centimeters increased the survival rate by nine years. Above that, the rates fell to four months.

  I had been, at first, greedy for the Internet, typing in “optic nerve inflammation” with steady hands. But I learned my lesson fast. “May cause a complete or partial loss of vision.” “MS is a known cause.” The various horrible possibilities just made things worse. My imagination did just fine on its own. On the other hand, with no diagnosis, I found certain, unhysterical Web sites: Uptodate, for clinicians; the Mayo Clinic; Physicians’ First Watch. I checked them when new information came in. On these sites, I found a couple of possibilities, rare disorders that cause trouble in the optic nerve and are sometimes related to uveitis: systemic lupus, neuro-sarcoidosis, Lyme disease. I wrote down their names.

  Dr. Mesipam, my internist, said, “It’s not cancer.” I looked over his shoulder at the locust tree outside his window. “I’m going to have to believe you,” I said. He was wearing one of the French shirts his wife buys for him in a deep violet that set off his dark skin. It was perfectly ironed, the creases like neat incisions. Dr. Mesipam’s offices are in Montecito, a wealthy forested town just south of Santa Barbara. (Oprah keeps a house there.) When he first started practicing and was looking for an office, colleagues warned him that “those people” would not see a doctor who had a foreign name (Babji Mesipam) and almost-black skin. Now he is a doctor to celebrities; people battle to get in to see him. I once had to crawl over Jonathan Winters’s knees to get to an examining room. Dr. Mesipam views this situation with permanent irony.

  I told him about my visit to Dr. A and said I had another appointment in L.A., to see a specialist in uveitis, in early January.

  “Do I have to go
back to L.A.?” I whined.

  He looked at me and said, “You may need to go to L.A. dozens of times. As often as it takes.” And then with a hint of exasperation, “I would go to L.A. very often if it were me. It’s your eyes.”

  I had a rather large speaking engagement coming up in February, I told him.

  “Where?” he said.

  “Virginia,” I said.

  “Let’s see,” he said. “That’s at least three planes.”

  I counted. “At least.”

  “I am going to have to say that it’s better not to do that,” he said. “We don’t know what we’re dealing with. I am going to ground you until May.”

  I postponed Virginia. A talk in Louisville. Then another and another. I felt a combination of anxiety, fear, and relief. Anxiety at the loss of income, fear that I would fall off the radar of the lecture circuit, and relief that I did not have to pack those bags, print out those boarding passes, check into the ubiquitous hotels. My world shrank. I had nowhere to get to.

  Then suddenly, I stopped going to church.

  At first it was because I could not be around crowds of any size. I was still worn out. My sight was not stable. From the way people looked at me, I was obviously sick. I was walking into the church office one day to pick up bettybickelsprayershawl, when another parishioner, a woman I knew slightly, was coming out. She seemed momentarily shocked, then rearranged her expression just enough to present a bland, distant, pained expression and asked in a lowered tone: “How are you?” It was, God forbid, sympathy. Her look said: Oh, I am so sorry you are over there, helpless. Unlike me, who is not. I knew the look: I had once handed it out freely to people in wheelchairs, to homeless men on the street, to women with bald heads. Now it was handed to me.