The Moonlight Sonata at the Mayo Clinic Read online

  Mark said, “I’d like to pray.” The nurse was standing at the threshold about to pass through the door when she stopped, turned, and said with hesitation, “May I join you?”

  “Of course,” we said. And Mark added, “The more the merrier. May I ask you your name?” She said it was Marci.

  The three of us held hands. Mark let a long moment of quiet pass. And then he said, “We ask you, Creator, to be with us today and especially with Nora and with the surgeon and with Marci to relieve us all of anxiety.” This was a prayer, I thought. It said exactly what I needed to hear.

  Mark said, “Amen,” and Marci said. “That was really nice.” And later when Mark left, she said to me, with admiration in her voice: “What denomination is he?” I wondered what she would have thought had she known that Mark was gay. And that that part of his character—his warmth, his capacity to include a stranger—came from what he had made of vulnerability.

  Later she would say she prayed every morning with her children, and I would wonder if she was a fundamentalist—Christians are deeply divided because of the horrors of combining politics with religion—but then it did not matter. It did not matter a whit. What mattered was that someone from the medical world was willing to join us in a human activity other than cutting into flesh and carrying bandages, that the “practiced manner” of the medical world, often distant, detached, was dropped. And later still I thought, if she prayed every morning with her children, maybe she knew something about prayer.

  Mark left, and Dr. Cizek walked in. His manner was brisk. He told me to lie on my left side, that I would feel a prick as he injected something to deaden “the area.” He did this with dispatch. I was in a little nightie with a blanket over me, and I felt, as in the chair at Dr. Lowe’s office, like a child. Marci sat next to me. Dr. Cizek and I chatted about his name, Czech, and my last visit to Prague, as the deadening made its way into the “area,” namely my temple. Then he said, less briskly, more seriously, “Now we’re going to have to be quiet, and you will have to lie very still,” and I realized he was going to cut into my artery, and if I moved …

  The urge to move was always there right under the grip of not moving.

  I smelled burning, and he said, “That is what you think it is.”

  I lay completely still for twenty-five minutes while he took sections of my artery, cauterized the edges, did not cut through the artery and cause me to bleed to death, and then, with a word about how I would feel a tugging, stitched me up. Marci held still. She kept me still.

  Then, with a few words about when I could take off the bandage and when the stitches would “fall off,” I was spilled out into the waiting room where Vincent took my hand. His expression told me I did not look good. He took me home.

  The transition from the biopsy room to my house felt as strange as if I had been in an instant transporter. I was in one world: a sterile room, a white gown, a doctor who cauterized flesh, the fear of a slipped knife, and then I was back in my dining room with my grandmother’s Biedermeier dining table and chairs and a teapot, still warm, that I’d made to cheer myself up even though I could not drink it until after the biopsy was over. My desire to be “normal,” I understood, was so powerful that it rendered the experience in the clinic to a place in my mind where it had not actually happened.

  I wanted a connection between the two besides the one embodied in me. I thanked Marci again for stepping out of her role as “nurse” and into “human,” by joining us to pray. She was the other connection, besides me, between two increasingly separate worlds.

  In the next week, in the middle of the nights, I reviewed the days. I know insomnia, but this was not it. My thoughts needed the night, its quiet, the unconscious person next to me, the lack of distraction. In those early days, I woke up, partly because of the steroids and partly because I had to go over, absorb, not make sense of, not yet, but bring closer, the days. Because the days were spent in the unfamiliar country, behind the glass wall. I had to acquaint myself and interpret the huge presence of medicine, medical systems, clinics, doctors—a place I thought I had known but did not. I had to start to draw a map. I had to learn its words. Oz, as it turned out, would exact its own language.

  One night, as I lay awake, the day’s words pouring through me (lower quadrant, vasculitis, kidney failure), it started to rain. Rain in California is almost always a welcome relief; we live in a desert, with a wet season only in the winter months. In New Mexico, rain was never taken for granted. At first it was a drip drip, then a kind of clatter, and then a whoosh as the gutter near our bedroom window poured out. I lay awake, relieved of fear and dread for a few minutes because of the rain. The rain came down, falling evenly. I could count on it. I smelled the fresh air through the open bedroom window. It would water everything; nothing I could do or not do would change it.

  As I listened to the rain, I understood that I was, more or less, in the present. In what was real now, as Mark would say. And I was not oblivious to my experience of the world. I was in the world, and it was raining. I felt my smallness, a small thing, in a bed, with the large rain all around me. Ever since I was a child, I’ve had these moments when I sense the large world just briefly, all that is, outside me. It doesn’t seem to matter what I am doing or where I am; I get this sense of how big it all is, a globe spinning through space. And with this apprehension comes the word miracle. Grizzlies, salmon, bees, sunflowers, sand, oceans; Marci, the nurse; Vincent, granite ledges, an unending flow.

  I had been skipping over the present in my efforts to work through the list of those things not happened yet. I so regularly skipped over the present that I thought it had no value. What had value was the next thing. And the world? I passed through the world, barely glancing left or right.

  But that night, in the rain, I thought that the present had something in it, and the word that came to my mind was so generic it hardly matched what I felt. The present had information in it.

  If you stayed in the present, if you paid attention thoroughly to the now, what it had in it might come to you. And if you did not pay attention to the present, you might miss essential information that might be exactly what you needed. More than what you needed. Janusz Szuber wrote:

  The real, hard as a diamond,

  was to happen in the indefinable

  Future, and everything seemed

  Only a sign of what was to come.…

  Now I know inattention is an unforgivable sin.

  And each particle of time has an ultimate dimension.

  Each particle of time. Has an ultimate dimension.

  About five days into what I now called it, Jodie (my friend who had come to hear me preach) called to ask me if she could do something for me. I had talked to her on the phone; she had the bare outlines of what had happened—I could sense in her voice that she was trying to figure out what. She would bring me something, she said, or we could go somewhere. She would drive. Her voice was anxious. She and two other women were my close, dear friends in town. She was also more than a friend; she was a comrade. We had been in a trench together.

  It was July 2008. I was packing for a vacation to a valley in northern Washington state, thinking of wilderness hikes and my cousins’ good company. The phone rang. I picked it up. Jodie said, “Something has happened to Frank. I’m driving to the hospital. Will you meet me there?”

  I put down the phone and ran. When I got there, Jodie was sitting outside at a table near the emergency room. As I walked toward her, a fireman, a friend of mine, ran from his car to meet us. Jodie’s husband, Frank, had been surfing off a wild coast north of the city, alone. But other men on the beach had looked up at some point and realized he was facedown in the water. They paddled out. They brought him in. They called 911. One of them was a doctor, and he tried to revive Frank. A helicopter flew up, and now it was flying back. It would land at a school nearby, and Frank would be put in an ambulance. Jodie and I sat at the table holding hands. It was very quiet. When we saw the ambulance, we s
tood together holding on to each other at the gaping hole in the hospital wall that was the driveway. A chaplain, who had joined us, said to me when we saw Frank on the gurney, “This does not look good.” I remember a feeling of ice passing through my body.

  In the days that followed Frank’s death, I tried and tried to find ways to ease Jodie’s suffering. Every day it was like a pile of sand that I tried to climb, and every day more of it slid down and I found myself at the bottom again. One memory in particular stands out. I was with her in her bedroom on the day of Frank’s memorial as she sat with her children and his ashes. They were dividing them up, some to be cast into the ocean, some to be kept in a jar. She looked up at some point, and I looked into her eyes, and in them was a terrible blank horror and sorrow and rage. I could not take it in. What did I do? I looked away.

  I told Jodie I wanted to walk on the beach. This sounded almost unattainable, but I wanted to try. The beach in December in Santa Barbara is often beautiful and deep. The water recedes, exposing the sand and rock, and the air is clearer than in the summer (when fog often comes in early and hugs the coast).

  Jodie picked me up, and we drove to Hendry’s Beach, where locals often walk their dogs, and were soon out on the sand. I felt excited, as if I were on an exotic trip. I had not been on the beach since “it.” She settled herself on my right. We talked preliminaries. I looked ahead as she talked, enjoying the company of my beloved friend, and then I suddenly realized she was a blur, a shadow, a watery shape, coming into and out of the field, sometimes suddenly, sometimes not at all. I could no longer see her on the periphery of my vision. I had not known what exactly I had lost, and now I knew. I might lose some more, too—this came at me at the same time. I almost cried out.

  Then Jodie said, “What are you afraid of?”

  “Going blind,” I said.

  “And then?” she said.

  “I don’t know,” I said. “I don’t know if I could live.”

  Chapter 8

  IT WAS NOW MID-DECEMBER. Vincent’s family by tradition comes to our house for the holidays, and we would host Vincent’s stepmother, her brother, and her nephew. Because Vincent’s father had died so recently, in August, the gathering was all the more weighted. These were people I loved. But how we were to manage the day-by-day while I was living in another country, we had not allowed to enter our conscious minds. I made lists and discarded them. I could not shop. Our beautiful and spirited cousin, Claire, got engaged to her Matt, a steelhead biologist, the exactly right man for her. I missed both the small family dinner and the larger celebration.

  I was off the intravenous steroids and on the pills. I looked at the bottle every morning with distaste and then swallowed six round tablets, which rapidly puffed up my cheeks and made a small hump on my back. I had never had to take a prescription medicine for more than a few days. I had never had side effects. I felt old and ugly.

  Vincent was the merest distance away.

  One Saturday morning, over breakfast, I said to him offhandedly that I’d read somewhere that when men got sick, their wives took care of them. And when women got sick, their husbands left.

  “I’ll be leaving in a few weeks,” he said, not looking up.

  “Thank you for the warning,” I replied, same tone.

  “I thought I would leave before Christmas,” he said, “because then you could forget about it and go to Paris.”

  “I appreciate your thoughtfulness.”

  “No problem,” he said, using the phrase common in California, a phrase we had often discussed: did it mean “thank you” or “don’t mention it” or “yes, it was a problem, but I can cover it”?

  We went on with the day as if no conversation had taken place, and in the afternoon Vincent proposed that we go together to buy a Christmas tree. I agreed, but before we got in the car to go to our usual lot, we sat down in the dining room.

  I said something about how I was beginning to understand the value of the present. I could catch, without his having to say anything, that this was not a conversation he wished to have, but I kept on going in an effort to reach him, across the gulf or the twelve inches that was between us—it did not matter how large or long—me on Saturn, he on the planet Earth. I would make a tether with words, I thought, but the only ones that came out of my mouth sounded, as I heard myself speak them, like those from a New Age fluff head. “The present,” I said, “is all we have.”

  He was lying on the window seat. I was sitting at the dining room table.

  I said, “It has been a drag … but the present is … full.” I ground to a halt.

  Vincent said, “The present isn’t great for me. I’m getting nothing from this. I’m completely exhausted, and all I want is to go and get a damn tree.”

  I took this to mean that he really planned to leave me.

  I remembered how I had felt when he got his right hip replaced. (His hip ball had never really developed, causing him pain throughout his life.) I had to leave at five a.m. to drive from a friend’s house in the Hollywood Hills to the hospital in Santa Monica—he wanted me to be there as he woke up. The traffic always stalled me, and he was always hurt because I was always late. Once we were home, I helped him put on his blood-clot-prevention stockings every morning, got his breakfast, brought him the newspaper. I put everything I could think of at counter height the day I left for New Mexico for three days because at the same time my brother was dying of cancer in Socorro. I discovered how hard it is to be a nurse, and how even the smallest things (helping someone with stockings) become too much to bear because they are on a list with ten other things and your own full-time life, and how exhausted you are, how there is no “gift.”

  Fighting back tears and fear, I tried to say something about understanding what he must be feeling (which sounded like something out of Marriage Counseling for Dummies), but soon I began to rant about how I was the one who’d had to go to all the doctors’ offices and have a temporal artery biopsy and would possibly lose my sight. (We would call this, later, “playing the sick card.”) I stopped.

  When we first moved in together, in that state of passionate love that made everything, even traffic jams and moving boxes, into bliss, we got all our possessions, finally, into the house in the Berkeley Hills with views of the Bay Bridge and the Golden Gate (well beyond our means) and, exhausted, had a huge fight. Furious, I took a look at this man, the guy I had thrown my lot in with, and realized it was all a big mistake and I should leave him right then (I was twenty-nine). But before I did, I called an old friend. She said, “Go out on the deck and stand there and say together, ‘It’s not what it was cracked up to be.’ ”

  Over twenty-five years later, we looked at each other in the dining room and silently walked to the car and got in. Floating over our heads was all that was not and could not be resolved: Vincent’s surprise and resentment and exhaustion and guilt; my surprise and fear and paranoia and exhaustion and guilt and isolation. The anxiety over the upcoming family visit. Christmas itself.

  Vincent said, “I didn’t mean to hurt you.”

  “I get that,” I said. “I was hurt, be that as it may,”

  Our particular Christmas tree lot is on a fairground run by a family that seems only once removed from the drug trade, and this year they had decided to include karaoke with the buying of a tree. When we drove up, a young black man was singing “White Christmas.” The owners, husband and wife, were sitting in lawn chairs smoking and looking as if they’d rather be driving back to Oregon, while their teenage son rummaged in their trailer, soon to emerge with a chain saw.

  I got out of the car feeling suddenly cheerful. We walked around, as was our habit, to different parts of the lot finding trees we liked and calling out to each other their better attributes. This one is very healthy, I said, and then pondered my choice of words. We usually emerged from the forest with our leading candidates and then negotiated. Or argued until one of us gave in. The wandering through the trees in their stands was immediately sooth
ing to me. We might last through buying the tree. We had a routine.

  I found a round (healthy) tree, my candidate.

  Vincent found a very tall thin tree, a spruce, on sale. I did not like the tree. I thought it would look like a large toothpick in the dining room. I wasn’t even sure it would fit. But I looked at him, and some part of me, so absorbed in life on my side of the wall, so consumed by my own fear and dread and illness, found a way out and said that I thought the tree might really work. He looked pleased. The teenage boy, happily wielding the saw, cut the base to fit our stand and helped load it into the car, and we drove home.

  We hauled it out of the car and managed to carry it up the driveway. Vincent opened the French doors of the dining room/living room wide, and we got it in. I felt fit and hearty, a woman who could carry half a tall tree. I crossed the fingers of my heart, and we stood it up.

  It was, of course, the most beautiful tree we had ever had. It suited the dining room perfectly; its height reached into the pitch of the ceiling. Vincent looked like a man who had conquered K2; I managed to congratulate him without sounding peevish. The present, I figured, did not have to be discussed or made holier than it was. It was here, in all its hereness, tree lots, karaoke, a chain saw, a tired man and a sick woman bound by vows written down in 1549 by a new archbishop who loved a woman and was alive to words, a man who understood what is lovely and simple and safe to say, as a feeling from the heart becomes a wild dare when spoken as a promise. We had said “in sickness and in health” then, and now the dare had presented itself.

  Chapter 9

  BOOKS WERE TO MY FAMILY’S HOUSE like beds and stoves, the most basic items, necessary for survival. When I sat with my father that last Christmas, behind him on the shelves were the titles I had read all my life, lined up like old friends: Emma Goldman’s Living My Life, A. E. Housman’s poems, Winston Churchill’s The War Years.