The Moonlight Sonata at the Mayo Clinic Read online

  We did not talk about God in my family. We talked about going to church and Father Kadey and marching for Dr. King. For a while I had a best friend who was a Roman Catholic, and I went to church with her because I liked the doughnuts her father bought for us on the way home. The Roman church service was pretty scary to me—the bleeding hearts, the fact that I could not take Holy Communion, the sins, the ringing of bells, the tapping of the heart—but I could see that the family organized itself around the church and belief. My family did not. I think for them it would have been impolite or vulgar.

  When my father came home to us, he brought with him softball games, horses, an honest heart I could lean on, and AA. And his AA friends, who often gathered at our house and drank coffee and smoked cigarettes (I emptied the ashtrays into a silent butler), brought with them the thing they called Higher Power. They talked freely and openly about falling down drunk, about lying in the ditch, and about running out of any other option besides this Higher Power. If you had fallen off the edge, I understood finally, you could talk about God. Their stories were “grassroots religion,” a friend said, and that’s what it was.

  I left off going to church when I was seventeen and went to college. I stayed away for ten years. I was working as a journalist in San Francisco then, stringing for Time magazine; my friends were artists and writers. I liked my work. I liked my friends. My life made sense but not enough sense. I found myself one Sunday in a beautiful dark-shingled church in the Marina District in San Francisco, crying.

  My friends were leftists—some of them called themselves Marxists. Some were serious and thoughtful, others not. In general, Christianity was held in contempt or was not understood apart from the civil rights movement. So my decision to attend services at a pretty little church on Sundays was met with bafflement and condescension. “It looks like a hunting lodge,” one writer said as he surveyed my church. My closest friend at the time wrote me a long letter about how Christianity was nonsense.

  But human beings require a larger story to fit themselves into. I was fitting my life into the larger story, the larger map, of Christianity.

  I loved the liturgy of the Episcopal Church: the procession down the aisle, the cross held high, the kneeling at the communion rail. I loved the old words of the old prayers: “Almighty God, unto whom all hearts are open, all desires known, and from whom no secrets are hid.”

  I kept going to church, and I kept my religious views mostly to myself. When a woman in Berkeley complained that there were crucifixes on the walls of a Catholic high school where she had taken her daughter to visit as a prospective student, I did not say, What did you expect? I did not utter a word.

  Later, married to Vincent and living in Santa Barbara, I worked in the soup kitchen housed in my church. I kept watch with dying friends. My brother, Kit, died of cancer in his fifties, much too young.

  Finally I decided to write about my faith, my doubt, my struggle to understand these events. It was partly, I think, because of all those years of not speaking about it.

  Now people wanted me to come and talk about what I had written. I was surprised and gratified when a church or a university invited me to give a talk or a reading (me?), so surprised that I always said yes.

  I had become a religious professional without realizing it.

  Gradually a crack between what I preached and what I practiced appeared and widened. I had the preaching part down, but the question was, what was my practice? Because of my travel schedule and the expectations placed on me, I lived in a state of anxiety. Before each and every speaking event, I felt terror, dread, and the desire to jump out of my skin. It started before leaving the house. I was not afraid of flying; somehow I gave up control once I got on the plane, but don’t ask me to pack a bag and leave my living room.

  I did not “pray.” I did not have time. There was a lot of loss in my stories, but it was someone else’s loss. I was in charge. I stood at podiums and pulpits, giving and giving, talking and talking, and meanwhile the things not happened yet occupied my mind like a colonial army. I might describe what was saving my life, but I did not know that something was killing me.

  And there was a disconnect between what I got from Sunday church and what, as it turned out, I needed. In the church service, there was a lot of “Almighty God.” In the hymns, there was “A mighty fortress is our God.” Yet in the gospels read each week, one heard about a man who knelt down and hugged children and said, “Be like them.” Or who talked about lilies in the fields and swallows falling to the ground. This man healed someone every time he turned around: a blind beggar, a paralytic, a woman who couldn’t stop menstruating. And all those lost things—the coins, the sheep, the son. This person—wasn’t he the reason we were here?—seemed to have been relegated to the corners of the church, in the shadows, just outside our vision, on the periphery.

  In “Suzanne,” Leonard Cohen sings: “Jesus was a sailor when he walked upon the water and he spent a long time watching from his lonely wooden tower and when he knew for certain only drowning men could see him …” Only desperate men, I took this to mean. Only those who were lost.

  I was, as it turned out, drowning, but my head was just enough above the water that I felt fine. I might be treading water with greater and greater speed, but you don’t know you’re drowning until you go under.

  When I was not writing and speaking, I worked for the environmental group within Patagonia, the outdoor clothing company. I am a part-time editor, the perfect day job for a writer. I write in the mornings and work for Patagonia in the afternoons. I have done this for over twenty years. Patagonia gives away one percent of sales to tough activists. At Patagonia too we did not always practice what we preached: one day one of our grantees came to visit us—this group of people hoping to help save steelhead trout and the Alaska wilderness and the river that ran right outside our doors, and she stood looking at us, with our heads bowed and our eyes glued to our computer screens. Finally she said, “Do you think maybe we could go outside?”

  There is much to be said for the life I led. I was lucky. I loved seeing towns I’d never seen, on someone else’s dime: I watched the Mississippi Falls one night in Minneapolis, woke to the mountains in Sun Valley, drank real bourbon in Louisville, drove late at night with a bunch of Episcopal priests to swing dance at the Broken Spoke outside Austin. I loved meeting people in Idaho and Indiana and Kentucky, places I might not have visited on my own. Where I went was based on a toss of a coin or a finger traced on a spinning globe.

  In some of the parishes I visited, the idea of “small groups” was taking hold. In these gatherings, and the right climate, people were telling stories. I got to hear what people had found out about mystery or sacredness or what they called God, on the ground, in the trenches, outside of religious doctrine or within it, outside belief systems or within them. Inside churches, outside them. Once people had the freedom to talk about it, a wealth of knowledge emerged.

  In a church in a suburban town in California, I met with the altar guild, all of them women, most of them elderly. They were the women who managed the practical side of communion: they washed the altar linens and then ironed them, kept track of the candles, ordered the wine and the wafers. Without them, the service would not happen.

  One of them told me, with some embarrassment, that before putting the small cloths used to wipe the communion cup into the washing machine, she said a prayer that the stains would come out and the linens would get through the wash, and then that all the people in her church would get through, too.

  At my own church, Trinity in Santa Barbara, Mark Benson, who had lost his partner to AIDS, said he had asked a priest where Phil was, and the priest had answered him with “a hackneyed Christian line about where the dead go. I think he quoted some line from scripture. It meant nothing to me. I realized later that I needed the priest to enter into poetry because that is where Phil is. He could have said, ‘Well, Phil is at the zoo now.’ Something that would clearly express the fact th
at Phil is gone, no longer literal, not here, not visible, but not absent, not without influence, not dead.”

  In New York, at an Episcopal church on Fifth Avenue, a woman said that when a friend’s son committed suicide, she told the sky.

  At a yoga studio, also in New York, a teacher said, “It’s a struggle to find God. Some people have a kind of heart for it, but for most of us, it’s a struggle. It’s a struggle for me.”

  Sometimes people told stories that were a little too Bible Stories Illustrated to be quite believable, or too New Age—sunshine and ocean waves. But if you gave people enough time, the cant wore off, and the individual experience came through, often with its own ragged edges.

  Once I had been to the museum in New York, I recognized what they were. Pieces of derroteros. Fragments of coastlines.

  At the same time, texts found buried in Egypt in 1945 were finally fully translated. They dated, scholars thought, back to the second century. They are called the Gnostic gospels. Someone named Thomas wrote one that is completely different from the tone of Matthew and Mark and Luke and John. Thomas is a Zen teacher: very pure, without story. Someone named Mary wrote another, and another was written by an author named Mary Magdalene. These new gospels were discussed in some of the churches I visited, but their relationship to the four Synoptic or “certified” gospels (Matthew, Mark, Luke, John) was not discussed. And to imagine that one of them might be read on a Sunday in place of one of the four—that was really not discussed. They lived in another world, that of academic research.

  Priests and ministers partially appreciated the stories told in small groups and partially condescended to them. Or what felt like condescension may have been more like confusion. The church, including me, didn’t seem to know exactly what to do with them. They were the church you can’t see. But they stayed with me. What I did not understand was how important they were.

  One day I woke up and saw the connection between the Gnostic gospels and the stories I was hearing on the road. The Gnostic gospels were old. The stories I was hearing were new. But they had something big in common: they were witness accounts. “I saw,” they said. “I encountered.” “I understood.” And while the Gnostic gospels were old, they were new to the church. For two thousand years, the church had relied on an approved pool of stories, the four Synoptic gospels—reliable and valuable but limited. Inside the walls of churches they were read out loud Sunday after Sunday. These new stories—the Gnostic gospels and the stories people told of their own encounters—were free range. Now what?

  There was much to be said for what I saw and what I heard when I traveled, but I was missing something I did not know I was missing until it came back to me. Part of it was a particular kind of pleasure. I didn’t taste my (always organic) carrots or leeks, as I ate them quickly while I made lists of the things that had not happened yet. I didn’t see the tree, a beautiful Norfolk pine, in my backyard as I ducked to cross under its bough on my way to my office to write a talk or a homily or a chapter. I was not here when I was here. I was always in the world of the things not happened yet, binoculars fixed on the horizon.

  Part of what I missed was something that remained nameless. I was numb in an area that was without a name. I was numb, and later, I would be raw.

  I couldn’t imagine stopping: when a friend said she was taking a Sabbath on Saturdays, unplugging her phone and Internet and not working and not shopping, my mind went completely blank and I asked her what she did. “Sometimes,” she said, “I make jewelry. Sometimes I dig for potatoes. And sometimes”—here she paused—“I nap.”

  And like the rest of you, I lived in the United States of America in the year 2009, and I was overloaded. I have a husband who cooks and shops and cleans, unlike so many women, but I was still full of lists of things that needed to be done: the refrigerator was failing, the water heater was too old, termites had found their way into the floor near the dining room door. Our cell phones needed upgrading, our laptops were ready to explode, our garden was overgrown. The godchildren called: a girlfriend sounded unstable, a job hunt wasn’t working, a marriage was proposed. Everything and everyone needed time.

  I was sitting on a train talking on my cell phone to a close friend when my husband texted me, asking if I wanted to meet him at work or ride the train all the way home, and I felt as if my brain were going to divide into two halves and fall apart, like an overripe melon. I texted him quickly, “Will ride train,” and then apologized for my abruptness, and he texted, “Sorry. U have 2b on top of everything.”

  I had 2b on top of everything.

  Even when I didn’t need to rush, I rushed. I fast-brushed my teeth, I washed the dishes so fast I dropped them, I threw laundry in the direction of the washing machine, my mind working on the things not happened yet.

  A friend asked, “Why are we all in such a hurry?”

  Books with advice about slowing down or living in the moment or meditation or prayer were at first attractive, then just another job. I put them down in the bookstore.

  I stopped listening to my neck and shoulders that spelled out IN PAIN. I registered that I was tired and pushed on. When Vincent’s father died in August, my grief slowed me down but, I confess, not for long. In September I turned sixty. There was more of my life behind me than in front. How was I to “spend” my life? But I did not ponder these things: I thought of Carissa at the window in New York and said to myself, Let’s do this forever.

  In Santa Barbara that November, planning to leave for New York, then to attend my father-in-law’s memorial at a historic mining town outside Reno where he had loved to amble and record history, and then to spend Thanksgiving in San Francisco with Vincent’s family, I lit the paper and kindling, sat back on my heels, and noticed the blur at the edge of my right eye. At the periphery. Very soon afterward I drowned.

  Chapter 3

  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 Thanksgiving.

  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 underlying 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.