The Moonlight Sonata at the Mayo Clinic Page 5

  And a few other people were clear about the no as well. I led a retreat at a local monastery, about a year after I decided not to go to seminary, with the people from the church where I had worked during my ministry study year. Saturday evening, one of the men who had been on my “discernment committee” at that church walked up to me, after we’d both had a beer, and said, “You sure look a lot happier than you did when you were working with us.”

  “Was it that obvious?” I asked him.

  “Yes,” he replied.

  I was never quite sure entirely, in the end, why I stopped. The lingering question was: If I am saying no to that priesthood, to what am I saying yes? There was something on the periphery that I couldn’t make out. A door closes and another one opens, said a friend, but it’s hell in the hallway.

  Vincent doesn’t go to church, but during the time I was “discerning,” he said he was not so worried about a difference in belief between us as he was about the demands of the professional priesthood: he did not see himself as a minister’s wife. And he was not so sure it was the right choice for me: when I worked in the soup kitchen at the church, he pointed out, I came home light and cheerful. When I came home from a church meeting during the year I was discerning the vocation to priesthood, he said, “You are full of planning and intrigue.”

  “I know you can’t do it without me,” he said one day, “and I don’t wish it for me. But it’s also not what I wish for you.”

  As I traveled down the road toward the vestments and the collar, the evening meetings and the Sundays taken over by church events, the gulf between us widened. But one night I led a service of Taizé, from a community in France that has formed itself around simple songs sung in Latin and a lot of silence. The leaders there devised these liturgies to reach the thousands of young people who come to Taizé speaking different languages.

  The church was dark. Vincent decided only at the last minute to join us. Afterward he said he liked it. It was to him, a combination of “Quaker and Catholic.”

  “It’s funny,” he said. “I can’t sing ‘Lord, I adore you,’ but I can sing Adoramus te domine.” That night I began to see, dimly at first, then more clearly that part of the reason I had decided not to be a priest was because of words. Partly because of being a writer of words.

  I preached on and off during the years of discernment, and one Sunday in Santa Barbara, one of my closest friends, Jodie Ireland, came to hear me. Her mother had just died. She told me later she began to cry at some point during the service. Churches are one of the few places left where you can publicly and honorably cry.

  “Then you stood up,” she said, “and started saying, ‘I believe in God the Father, and his only Son,’ and I didn’t believe it, so I stayed put.” (She didn’t come back.)

  She was referring to the Nicene Creed, which begins: “I believe in God, the Father Almighty, maker of Heaven and Earth. I believe in Jesus Christ, his only Son. I believe that he came down from Heaven …” I had been standing up and saying the creed since I joined St. John’s Cathedral. I can recite it like the poems I memorized in the fourth grade. But I took note that Sunday that one of my dearest friends found the words of the creed the thing that divided her from the other people in the church, and from me, when she had, moments before, found a place to grieve.

  Shortly thereafter I was at breakfast one morning at an Episcopal monastery in the hills above Santa Barbara, and I asked a table full of priests what they thought about the creed. Three of them said they only mouthed parts of it. One of them, a young man from Los Angeles, said he was entirely frustrated with it because on Sunday morning he didn’t have time to explain to the new people who might be there out of deep need or longing or because they had experienced something they didn’t understand, that the “Virgin Mary” in the Nicene Creed was a metaphor. I thought of Jodie.

  “The church is better at telling people what the church believes than at eliciting from people what they believe,” said Gary Hall, dean of the Washington Cathedral in Washington, D.C. “I think that anyone who gets themselves and their family up and goes to church in the face of so many attractive alternatives must have access to some deep truth or experience of God that they are seeking to make sense of in community. The church responds by boring them out of their minds and telling them what we think is shameful.”

  The words of the creed were written down in Nicaea, in what is now Turkey, in the fourth century, at a meeting organized by the Roman emperor Constantine, a new and opportunistic convert to Christianity. Constantine wanted to bring some order to the many stripes and communities that made up this now-popular religion. And because of that, a lot of things changed:

  “In the changed world of the fourth century, … when Christians ceased to be liable to occasional persecution and became instead the favoured cult of the Roman empire, the character of their Eucharistic worship also changed,” says Paul Bradshaw, an authority on the Eucharist (communion). “Celebrated now in large public buildings, it took on the style of imperial court ceremonies and incorporated features drawn from the pagan religions around, of which it saw itself as the true fulfilment.”

  Before this meeting at Nicaea, there had been no creed, no special buildings for worship. There had been instead gatherings of people in houses, around a table.

  The meeting at Nicaea and the creed itself were the beginning of the large map of Christianity. It was an effort to gather up disparate strands, different stories, a ragtag band of men and women who were following what was a memory and to make them into One. Out of Nicaea came the ideas—“God, the Father Almighty,” “Jesus Christ, his only Son,” “He was born of the Virgin Mary,” “He ascended into Heaven.”

  What had been a messy group of followers on a road of discovery suddenly became the empire’s religion, linked, fatefully, to a state, to power, and to conquest.

  It is the map that people outside the church think all of us inside the church believe. They think we believe that Jesus is God’s only son. They think we believe that his mother was a virgin. As the Red Queen says to Alice, “Six impossible things before breakfast.” After all, that’s what we stand up and say Sunday after Sunday. Not being able to swallow these rather hard-to-take ideas, they turn away. And wonder how otherwise intelligent people could believe such things. “You’re smart,” said the dean of Grace Episcopal Cathedral in San Francisco, her tongue firmly in her cheek, to the performance artist Anna Deavere Smith, “How come you’re religious?”

  Jesus never said a word about being God’s only son, nor made mention of his mother’s sexual history. These are the words placed in his mouth by those who wished to smooth out a fragmented story, a bumpy road, pointing, now I see, in an entirely different direction.

  In my travels, I talked to sophisticated Christians in Georgia and, in Berkeley, to yearning secularists. A young couple asked Vincent and me to preside at their wedding; another asked me to baptize their baby boy, outside, by the ocean, not in a church. People were in need, I could see, and sometimes the church filled it (where else was my nephew welcome?), but many times it did not.

  I kept going to church, one foot inside it, one foot outside, and on the talk circuit, trying to find the words that would reach those inside but not sound too crazy to those outside it. I tried to explain that there were a bunch of us who went to church who were not filled with passionate certainty; nor were we stupid. We knew, for example, that the gospels were written long after Jesus’s death; that Paul’s letters came first, before the gospels; that scholars had figured out, more or less (mostly less), at least some of the words that might authentically be those of Jesus and those that were attributed to him hundreds of years after his death.

  All this fascinating information—the historical Jesus, the time lag in the writing of the New Testament, the Gnostic gospels—was not exactly trumpeted from the rooftops in churches. It was, rather, whispered in the back alleys. The church, once it drew its large map, worried about what would happen to the laity�
��s “faith” if we knew too much.

  Now I lay in bed with medical terms mixed with fragments of the old words of the church’s prayers, hoping they would lead me away from fear and into relief. I had no experience with what was prayer and what was not prayer. What floated into the middle of this heap of words was a strange image: frogmen, swimming in my eyes, were working very hard to link together cables, like those huge things that hold up the Golden Gate Bridge. (I have not yet discovered where this image came from.) I was entranced. They swam, seemingly without my assistance: pulled, captured a stray strand, linked it to another, bolted it in.

  What is in charge of healing? I thought. How does the body know what to do?

  What followed the frogmen in my mind was the line from “Suzanne”: “and when he saw for certain only drowning men could see him.” I’ve drowned, I thought, but there’s something in the water with me. And then I thought, Will I see him?

  Chapter 7

  IN THE MORNING, I started what would be the routine for the next three days, adapting overnight, as human beings do, to complete change. One day I was going to work, driving, writing, producing. The next day what had been on my calendar was replaced with one appointment: Dr. Burks’s office, IV. I had talked about stopping my bizzy, crazy life. Now it—I—was stopped.

  I had breakfast, did not read the newspaper. Vincent went to work, looking haggard and determined. I managed to respond to a few e-mails and then went back to bed. In the early afternoon I walked three blocks to Dr. Burks’s office. I noticed on the way signs that said “restoration” work would begin soon on the creek that ran through our park. I thought I might check that out, one day.

  I sat in Dr. Burks’s uncomfortable wicker and wood chairs and did not read Arthritis Today. Fairly soon her nurse, Dianna, called me into a small room with two lounge chairs in it, hooked me up to the IV without hurting me, and covered me with a ratty red fleece blanket. I sat in the chair with the IV taped to my wrist, steroids dripping from a bag, drop by drop, down a clear tube, into my vein. I alternated between dozing and staring into space. I hadn’t brought a book or a magazine with me because I was afraid to read. I didn’t own an iPod.

  On the second day, a woman slightly older than me joined me in the room for her infusion, in the next chair. We chatted about what our Thanksgivings had been like, and the weather. I had so far not met another inhabitant of this country, or at least a person who might live there, so I felt a kinship with her, although she looked—in her pressed shirt, bright trousers, and neat, coiffed hair—the complete opposite of me. She asked me what had gone wrong, and I told her about the nerve. She didn’t say what was wrong with her. Her infusion finished before mine, and as she left, she said, “Think positively.” It was, of course, well meaning: an attempt to help. I had said some version of it myself or been on the brink of saying it (“Things will get better”) to someone recovering from surgery or sick with the flu in an effort—I thought then, before arriving here in this country—to give them a bromide, to offer a way out of where they were (as if they hadn’t thought of ways out themselves). But when I heard her words, even before she was out the door, I felt more alone. Think positively? I could barely think at all.

  On that second day, the routine was broken because the pharmacy didn’t deliver the Solu-Medrol to Dr. Burks’s office in time for my appointment. The pharmacy staff person (“What is your date of birth?”) said they didn’t get the fax ordering it until after eleven, and so they couldn’t order it from their supplier. I asked to speak to the pharmacist, who said that she would try to find it from the hospital next door and call me back. When she did, asking my date of birth, she said she had ordered two bags because then I would have only one co-pay. This combination of mix-up followed by kindness was, I would soon understand, common in the medical world. I rode a roller coaster of panic and confusion, followed by gratitude. The number of times things went wrong was plenty scary; the number of times people were willing to run to fix them was extraordinary.

  Vincent came home after work and a visit to the gym. My mind was full of Solu-Medrol deliveries, the fleece blanket, Dianna’s skill. Vincent lived in the country of e-mail, editing, and writing and of the body’s trustworthy dependability. He’d picked up a chicken cooked in orange sauce, and I exclaimed over how delicious it was (see “steroids: euphoria”) until he glanced over at me, and I understood I was not acting normally. We looked at each other across the border, warily. I felt more dependent on him than I had ever felt or ever thought I would feel. He said something about Christmas, and I realized I didn’t know what day it was.

  After the steroid infusions, Dr. Lowe planned to measure my sight and visual field again. My eye still had the blur. Deep in my brain, there was a voice saying, You put off seeing the doctor … you put off seeing the doctor …

  Meanwhile I now had three doctors: Dr. Mesipam, my internist, who had sprung me from the hospital; and Dr. Burks and Dr. Lowe, who were individually trying to figure out what had caused the inflammation in the nerve. Dr. Burks was worried about temporal arteritis, the inflammation of the arteries, which usually occurs in people older than me but could happen to a person my age. The way to discover temporal arteritis is to do a biopsy of the temporal artery. I did not allow myself to imagine what this meant. Temporal arteritis is an autoimmune disease, as is polymyalgia rheumatica, which often goes along with arteritis. Uveitis, the eye disorder I’d had for years, is also an autoimmune response. My mother had had an autoimmune disease, and my doctors had been interested when I noted that on my medical history, but a connection between her disease and mine had not been established.

  In the days ahead, in visits to various medical offices, I came across other people besides the other infusion patient. In my previous life, I had behaved as if I were so temporarily in this medical zone that the other people in the waiting room were not quite real. I passed a magazine; I commented on the weather. I was so sure I would never be really sick that I saw no need to recognize the human person sitting near me, Ladies’ Home Journal and the big-type Reader’s Digest between us. Now I studied them. When I went back to Dr. Lowe’s office, my second visit back after the initial disaster, an elderly couple were sitting across from me. She was clearly the patient, a little dazed, tired, her eyes sometimes drifting, lids closing, her sweater and skirt thrown together. Her husband, on the other hand, personified the word dapper, in a three-piece suit and polished shoes reading Money magazine. He was managing to sit in such a way as to be separate from her, even leaning away from her body. His clothes, his concentrated reading, his manner all said, I am not one of you.

  I watched her fall gracefully to sleep. I identified with her, this worn, vulnerable woman who was sick.

  Susan led me to the small room, where I once again propped my chin on the plastic cup and peered into the white box. She put a black patch over my left eye and the clicker in my right hand and told me to stare straight ahead with my right eye at the orange light. (Later Susan gave me one of the eye patches they used for the visual field test, and I wore it when typing to give the right eye a rest. I caught myself in the mirror with my eye patch rakishly in place; I was a writer pirate.)

  I was so tired I felt nauseous. The lights went off in a fog. When the paper rolled out from the machine, there were more dark patches in the bottom quadrant, creeping toward the center.

  Dr. Lowe said it was not a surprise. “Sometimes it takes this long for the assault on the nerve to show itself.”

  It’s worse, I thought. They told me it would not get worse once the steroids kicked in. Dr. Burks had said, “That would be extremely rare.”

  I asked Dr. Lowe if this damage was also permanent. And how had it gotten worse?

  He said carefully, “It takes a while, sometimes, for the damage to show up.”

  I called Vincent on my cell phone as I walked home. I was crying. He said, in a voice that was new to me, that was meant to anchor me and did, “You’ll have to live with ambiguity. You�
�ll have to live with that for a while.”

  Dr. Lowe and Dr. Burks agreed that I should take 60 milligrams of prednisone (the pill version of a steroid) a day and then, very gradually, begin a taper. He would measure the visual field once a week.

  The next week I had the scheduled biopsy of the temporal artery. I managed not to imagine what it would be like, and despite the fact that no anesthesiologist called me, I consoled myself that they would put me under.

  Vincent and I walked over to the clinic and met Mark Asman in the waiting room. (The term waiting room I collected as part of my new vocabulary. The name we use without thinking that connotes exactly what it is.) Mark is practiced at passing the time in medical zones, and he led us in making up waiting room magazine titles:

  WAITING ROOM

  LACK OF IRONY TODAY

  REAL ESTATE GALORE

  He asked me if I wanted him to come into the treatment room when the nurse called, and I said yes. I wanted him around as long as he was willing. Vincent remained in the waiting room.

  The nurse said of course he could come in and she would tell him when he had to leave. She led us down a short hallway to a small, sterile white room with a very narrow combination lounge chair and cot in one corner. Odd music came from speakers in the ceiling. I had a momentary memory of the brief late-1960s BBC series The Prisoner, when Patrick McGoohan is caught in a model “village” and a voice says periodically, “Number nine.”

  The nurse left us for a few minutes, and Mark and I stood next to a cabinet filled with sterile bandages and syringes trying to find a place to put our eyes. The nurse returned with a small bundle of things, all of which looked scary: sharp silver scalpels, bandages, and something that looked like dental floss and must have been sutures.

  It will only be a few minutes, she said. The doctor is cleaning up. I had an image of a man with blood up to his elbows washing it off in a trough.