The Moonlight Sonata at the Mayo Clinic (22 page)

But I was in New York, my face on public display. Damn, I thought. Was this the time to take a taxi? I couldn’t tell if anyone else cared at all. Then what came to my mind very clearly was the memory of a man I had passed on the sidewalk the day before. He was selling scarves and socks and batteries—those things for sale in sidewalk stands all over New York—but at that moment he was not selling; he was on his knees on a little piece of carpet, crammed into a little spot near his table, right up against the legs, his left foot nearly in the street. As I slowed down, he folded himself over and placed his forehead on the concrete, facing east, toward Mecca. He was praying. He was praying in
New York.
And I too am praying
, I thought, as I walked out into the cool spring air, where the pink tulips were budding on the dividers on Park Avenue. I too was praying in New York. I was praying to end my waste and pollution, my prejudice and contempt, my intemperate love of comfort and worldly goods.

I walked down Park Avenue, away from the subway. I don’t know what made me turn left instead of right. Soon I was walking past a copy shop, a small place that probably serviced both the midtown offices around it and also Grand Central Station. A young woman was standing practically in the window, opening a copy machine’s lid, a piece of paper in her hand. Just as I passed, she looked up, and I saw there, on her forehead, a dark, unmistakable smudge. I felt a jolt of pleasure. She looked up just as I passed, and we exchanged a look of odd recognition:
Oh, you … too
? I didn’t break stride, I was in New York after all. But it dawned on me within half a block that there would be others—and then I knew why I had decided to walk rather than scoot home on the subway.

I crossed through Grand Central Station, parting the sea of people under the stars of its dome, and a man carrying a briefcase was smudged; also a woman with a seeing-eye dog. I passed the Algonquin Hotel on West 44th Street, and the doorman, in his heavy green coat, turned, and there on his forehead was a blur of ash. When I was closer to home, in the Village, I took a saunter down Bleecker Street and passed August, a hip restaurant with dark booths and a beautiful glassed-in garden room. At a table near the window sat a woman in fur reading the menu, and right on her forehead, when she turned to look out at the street, was a dark smear.

They were such different people: the young woman at the copier, the doorman at the Algonquin, the woman in fur having lunch. Who knows what drew them to that particular faith on that particular day? I did not wash my face when I got home. I wanted to be identified as part of this collective noun, like an exaltation of larks or a covey of geese, a scattering of followers. Followers, not believers. Marked by dust. The dust that Jesus used to mix with saliva to make a paste. The dust to which we will all return.

I think of them now, and their untold stories, their unread maps.

The doctors can measure the changes in my sight and my hearing, but only I can measure the part of my faith I lost.

You will find me in church on Sundays, but not in the pew. Instead, I sit with a few others in a small chapel to the side of the main sanctuary in a twenty-minute meditation between services. A tiny heater buzzes on the floor.

Through the walls I can hear the choir practicing various familiar hymns.

It is the right metaphor for me: I hear them but only through the walls. I am in a different but related room.

I am glad to be freed from saying words that have ceased to be mine. The loss of old words has left space for new ones, here, written down. I went into exile and came out with something else; I am reimagining the nature of faith or, at least, of my faith. As are so many others.

And while you will not find me in a regular church service on Sunday, I have regard, more than regard, for the effort
made there over the centuries to describe and come to terms with our human condition, to find a moral bearing in the midst of death and suffering. A weight gathered up, prayers sent into the air, institutional continuation. A place for me to sit in silence. And a place that captures the old words, the foundational stories. I went to an Easter Vigil recently, just to sit in the dark with the others, and listened to the words from the temple priest and poet Ezekiel: “Create in me a clean heart, O Lord.”

I miss the company on a Sunday, the unexpected jostle, the tears that come unexpectedly, the stranger next to me when I take communion. The reminder of people in need. I take communion on Thursdays when I can, at noon, with the base community. I need the bread and wine.

I now take a Sabbath, borrowed (very loosely) from Judaism. On Saturday I put away the Internet. I don’t watch TV. I do not work. Other than that, I do what I want. I don’t follow the old road of Christian suffering for the sake of suffering, so I don’t set for myself more things not to do. Sometimes I sit in the backyard with Junior the cat. Sometimes I cook. Sometimes I nap.

Four times a week I meditate. At Trinity, twice a week, the rest at home. I have always disliked the idea of meditation. It was either “some weird thing out of India” that I heard about in my adolescence or some weird thing people talked about, a few times too often, in California.

But a friend I respect had taken me to Quaker meetings in New York to sit in the long silence that’s at the core of that faith, and when I emerged from an hour of silence, the leaves on the trees outside were sharper. A white-haired man had stood up at the end and said, “I have been thinking we are a body waiting for truth.”

What finally got me to start meditating regularly was not only Jodie’s question about where I was putting my mind, but a practitioner of acupuncture who has her own immune disorder. A woman of intelligence and experience, she told me that meditation creates “another matrix” besides the fretful mind worrying about illness.

The image of a
matrix
, a nonspiritual word, appealed to me. As did her mind, and her own suffering. And so I kept dragging myself to the meditation sessions at Trinity. They were agonizing eternities. Then one week I went as a thirsty woman to water. And very briefly, in the midst of the half hour, I had a moment where I felt the nearness of something,
a presence
.

“Imagine God, or the presence, or what you want to call it,” said a young man who teaches meditation, “just about six inches from your nose.”

“Imagine,” he said the next week, “that you are very good at this.”

The next night, as I lay in bed fretting, I reminded myself, as I have done before without success, that what I was thinking
had not happened yet
. And in second or two, I was back in the present—in a warm bed. I was in the infinite, raw present—and the present’s “information.”

When Jodie asked me, on the beach in December 2009, what I would do if I went blind, and I said that I would not know how to live, I see now
—see
now—that what was real then would not be what would be real should I go blind. I could imagine, then on that beach, that if I went blind, I would not be able to live. But if it happened, if it happened … it would have its own reality, its own
information
. The truth is, I would not know until I got there.

The meditation I am learning comes from the East. The
Jesus I follow comes from Christianity but, I hope, from the originator of that faith, before it was co-opted. The cup I drink from is like one at the Metropolitan Museum of Art in New York—a
kernos
, a vase for “multiple offerings” made during the Cycladic culture two thousand years before the birth of Jesus.

Following Jesus was meant to be an ongoing movement, not a creed, not a wall of set-in-stone words. A place where practices, like prayer, like meditation, were taught; where stories and memories, largely about vulnerability and suffering, were collected and shared. The body’s pain and suffering were meant to be part of this whole: I don’t think Jesus had in mind a place where you had to tolerate the
empty predictability of a service
and stand upright at the coffee hour if you had been diagnosed with lymphoma or sarcoidosis or lung cancer. He was, at the heart of his ministry, a healer.

And the stories of his followers were meant to be taken seriously, to become part of the ongoing larger Story. A river of stories, joining the sea. The living stories of a faith’s followers are what keep it alive.

I have more regard for how each of us finds a way; the man in scrubs playing the Moonlight Sonata at the Mayo Clinic, the girl in the wheelchair, the boy with no hair running in the wind, each of us feeling our way in the dark. “The infinite value of one human being,” a friend said, “isn’t that what it’s all about?”

This land of illness, behind the wall, is much larger than I thought, and through its lens, the world we all live in, what we call the natural world, becomes more precious. I said I would give quite a lot to have my old body back, but yesterday I
saw
the evening light falling on the old oak trees in
our park, their bark like the skins of elephants. This world is so beautiful, and not only can I still see it, I no longer pass through it quite the same way I did before. I, at least sometimes, am in it, in its beauty, in its enchantment, in its divine life. I would not trade this
information
for more speaking engagements or for all the riches (or most of them) in the world. Would I trade it for the old obliviousness? Maybe so. Maybe not.

In early December last year, I went for a regular visit to Dr. Rao, in the church season of Advent, a time of waiting. My vision was not as good as last time, probably due to the cataracts forming in the left eye because of the steroids. The visual field was better.

I sat in the room by myself, and then very quietly, almost without a sound, Dr. Rao opened the door and came in. I felt stilled. The room was stilled. It became in those moments, like the chapel in which I sit, a place that has been filled with concentrated grace. Coherence. Or some other word.

Dr. Rao was slower. He greeted me quietly. He shook my hand. Rather than talk to me at all, he simply arranged his stool to look at my dilated eyes. I said nothing.

Dr. Nazari, his new fellow, from Iran, slipped into the room. He stood in the corner and watched his teacher.

Dr. Rao looked at my eyes with so much concentration I could barely breathe. I thought about how many eyes he had looked at over the course of a lifetime. So many different arrangements of sight. Light. Color. These things that allow us to see. To see the world. To see the sycamore trees, the butterfly, Vincent’s face. He switched to the other eye. With the same concentration. I felt an immense gratitude
to this man who has spent his life looking at eyes and that he was still in the room looking at mine.

Dr. Nazari had not moved.

Then Dr. Rao took from his white jacket pocket the magnifying glass that all ophthalmologists carry and slowly, with the same concentration, brought it to his eye to look at the back of my eye. He looked at the other eye. He sat back. He scooted his stool over to the counter and made notes on the drawing of my eye for that day.

He turned when he was finished, moved his stool back so that he was sitting beside me, and said, “From an ophthalmological point of view, it all looks calm. No uveitis. The nerve is not inflamed but farther back”—he gestured with his hand—“farther back. It must be.”

“So you think it’s neuro-sarcoid,” I said.

“Oh yes, neuro-sarcoid,” he replied softly.

“The visual field has improved.” He smiled, gently. He looked carefully at me.
Did I understand that
? his expression said.

“Yes,” I said. “I am so glad.”

Dr. Nazari, in the corner, smiled.

Dr. Rao cleared up his thoughts and told Dr. Nazari to send a note to Dr. Baughman, the sarcoid specialist. Then he was out the door.

A few nights later I lay in bed. Unbidden, two words came to me: “You are …” Other words piled up behind them:
the kingdom? the power?
And then they were indistinct. I was trying to remember something; was it a prayer or a hymn? And then I saw a pond, a small piece of water that was, I understood, me or what I might call the words I have not
used yet here, my soul. And on its edge, a border, a ragged line. Then another body of water, much larger, deep, stretching out to a horizon I could not see. As if two pieces of a jigsaw were about to be fitted together. “You are,” I said. And then, again, “You are.”

Acknowledgments have a deeper meaning and feel inadequate when people have saved your life. I hope that all of those named here know that this is the current that lies under the thanks.

I thank my editor, Jane Garrett, for years of dedication, thoughtful ideas, strength, compassion, and courage, and Leslie Levine, for shepherding the manuscript through its final stages. I am deeply grateful to Chip Kidd for the cover. Thank you to Janet Biehl for her excellent copyediting and to Victoria Pearson for overseeing production editorial.

Jodie Ireland, Bill Powers, and Gary Hall gave me ideas about the manuscript’s strengths and weaknesses. This would not be a book without the three of you.

My agent, Philippa Brophy, read the manuscript and insisted on the revisions that turned out to be essential. Thank you. And thank you Julia Kardon, for your time and intelligence.

The Patagonia environmental team—Lisa Pike-Sheehy, Lisa Myers, Hans Cole, and Ron Hunter—carried more of my workload than they told me. Thank you.

I am grateful to Patagonia’s Susan Henderson for stubbornly working through the medical insurance maze.

I thank these excellent teachers: Kristi Cooper White, Diane Barrickman, Amy Havens.

I thank Malinda Chouinard for all that she did but especially for Cincinnati.

I thank my friends for the extra hours of driving, tending, cooking, accompanying to doctors’ appointments, and what we call “support”
that turns out to be sacrifice: Ellin Barret, Marie Schoeff, Ann Jaqua, Jodie Ireland, Elizabeth Garnsey, Cynthia Gorney, Terry Roof, and Art Stevens.

For the steadfastness from afar that kept me going: Martha Sherrill, Andra Lichtenstein, Harriet Barlow, Alice Gordon, Barbara Brown Taylor, Debbie Sears, and John Lindner.