The Moonlight Sonata at the Mayo Clinic (11 page)

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?

V
INCENT 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.

I knew from working as a prayer minister at Trinity that many people there had drowned. Prayer ministers work in teams of two. During communion, we stand at the back of the church near the baptismal font and wait. When a person approaches us, we stand with our arms around each other, enclosing a small, separate piece of air. (It was this circle—people holding each other up—that I remembered when people who had been sick themselves helped me out.)

The man or woman would then let us know the truth about his or her life: the daughter starving herself; the lymphoma out of control; the husband who may have embezzled.
The prayer ministers took turns praying out loud, which was always just about what came into our heads. I was almost always surprised at what came out of my mouth or the mouth of the person standing next to me, the words that seemed to come from the best place in us and also from another place, an otherness. The words were not sentimental or necessarily “religious”; they were words dug up on the spot, and they tended to have a fresh, original scent. Then one of us would take out a little sterling silver box containing oil on cotton and anoint the person’s forehead. After all that, the same person would march back to the pew.

The trick to keeping a confidence is to keep it secret not only from others but from the self, so I would see the same people after we had prayed together and not quite remember what they had told me. I felt as if I had left their secrets either in the air back by the baptismal font or in the font itself, which seemed to be the best place for them. But several times, more often than not, when I saw one of them holding a mug of coffee or eating a homemade cookie at the coffee hour, we would exchange a look across the space and the people between us. In that look was an acknowledgment of the disaster that had happened to them.

The irony was that in this place where you could cry in a pew or go to a prayer minister to pray, it was still hard to be actually sick, actually vulnerable. The very same woman who had told me of her lymphoma stood at the coffee hour trying to look upright and purposeful. The prayer ministers and the priests knew how many people were suffering; the rest of us did not.

I was embarrassed to be sick; I felt I had failed in some fundamental way.

On a Sunday in early January, after the news from Dr. Mesipam that I would not be traveling, I made my way back to a service on Sunday. I sat at the back of the church, in a pew that was in shadow, and leaned against the plastered stone wall. I stood up for the opening hymn. With one eye, I read the opening prayer along with everyone else. I sang a hymn. I listened to a decent sermon. Something wasn’t quite right. I felt a gap open up between me and the service, between my suffering body and the words I had repeated over and over for forty years. In
The New York Times
, Samuel Freedman wrote about a woman who had been raped and her first Sunday back in church. In the state she was in, the service did not console her. It had an “empty predictability.” That summed it up for me. I could not find a place in the service that gave me comfort or a place where I could expose my vulnerability.

And when it was time to say the creed, I stood up with the crowd. When they said, “I believe in God the Father Almighty,” nothing came out of my mouth. They made their way through “Jesus his only Son,” “Born of the Virgin Mary,” “Ascended into Heaven and is seated at the right hand of God.”

I stood there mute, and when everyone else said, “Amen,” I sat down.

The words were suddenly
all wrong
. It was not so much about concepts or theology. They were wrong
for me
. For where I was. I was so small. I was so scared. One might think a God that was Almighty would have been good news. But He was not. All these people—the Father, the Son, the Virgin—in that formal declaration were very far away, in another country. Not in my country. Not in Oz.

It’s easy to imagine that I was angry at that Almighty
God because He had let me fall sick, but at that moment, at least, that wasn’t what I felt. I felt … alone. I remembered all the people who had come to us prayer ministers and told stories of pain, anguish, and illness, and then stood upright in their pews, and at the coffee hour. How had we gotten to the place where the man who took the blind man by the hand was nowhere in sight?

And the words
almighty, holy, virgin, only
weren’t any help at all. I had said them, with more and more reluctance over the years, but the scalding power of illness had swept away pretense.

The word
heretic
came to my mind; a word based on the Greek for “choice.”

I walked out the door into a cold January day and did not go back.

I told no one. I had enough guilt left over from … where? The ether? That if I didn’t go to church on Sunday, it was my fault.