The Moonlight Sonata at the Mayo Clinic (7 page)

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:

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.

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.