The Moonlight Sonata at the Mayo Clinic (15 page)

“Thirty-three years,” said another. “You’d think he’d figure it out by then.”

“When I have a sore ankle,” said another, “I walk on it and it feels better.”

When my turn came around, I said that I understood why he had not been able to get help during the thirty-three years—he had been dealing with specialists.

No one laughed. The expressions on their faces ranged from concern to perplexity. I understood that I was very angry. I was angry at them and angry at the doctors and angry angry angry.

But I continued to go to the community. I talked, hesitantly, and then with more confidence, about the feeling of being isolated. Those people in the gospel stories—the blind beggar, the deaf-mute, the paralytic—they were not only sick, I understood, they were alone.

In that room, my story did not always fit into the larger one, but my
derrotero
had a coastline similar to parts of the larger map. I was not unlike the man desperate to get into the roiling water; I was afraid of becoming the blind beggar. The stories pitched into the places in me I was afraid to
reveal. The others had stories, too. Each week we grappled with the gospel readings, and some truths rose up. One week the reading was Matthew 10:40–42: “Anyone who welcomes you welcomes me, and anyone who welcomes me welcomes the one who sent me.… And if anyone gives even a cup of cold water to one of these little ones who is my disciple, truly I tell you, that person will certainly not lose their reward.” Ann Jaqua said, “Something about the water makes me think of how connecting to the person in need of water connects us to Jesus and then to God. God comes to us, not only in Jesus but in simple acts of compassion to the ‘others.’ It has an oceanic feeling about it.”

When I saw Mark Asman one day outside the library on my way out the door, I told him I felt guilty that I wasn’t going to church. He replied, “Not going to church? What do you call the base community? I think it might be proper to say, you’re not going to Sunday church.”

I still found the right words in the books I listened to. I finished
The Death of Ivan Ilyich
and
Anna Karenina
. And read
Great Expectations
. The great nineteenth-century writers continued to show me, as
New York Times
columnist Judith Warner said, “that little bit of raggedness that for some of us is really the heart of what makes us human.” My life, in its raggedness, was part of a large, ongoing, messy creation. I was not alone in my fear and failure to “conquer” my situation, my rage, and my helplessness. And yet as much as the novel
Anna Karenina
had raggedness, it also had a moral center. Not an Aesop’s fable with a proverb at the end, but a coherence, an order, that despite its tragic end made me feel more alive. If I believed in anything, I believed in the life of the imagination.

My friend Gary Hall, the dean in Washington, had
headed a seminary before moving to his current post. The seminary was failing, and it turned out that Gary’s job was to close it down. As he worked through the final days of the school, with grieving staff and students, he said that he turned, not to the prayer book or to the Bible, but to Shakespeare’s plays. The two that meant the most to him were
The Winter’s Tale
and
The Tempest
.

I did not know what “God” I believed in at this point. But I understood Jodie when she said one day, “I believe in writing. I believe in words.”

Dr. Burks told me that she wanted me to go on a new drug, a “steroid-sparing drug,” that would ease the tapering of the prednisone, she hoped. It was called methotrexate. It was “a kind of chemotherapy,” having been used against breast cancer at first and now against rheumatoid arthritis. It would tamp down the body’s ability to make new cells. I would have to have a blood test every month, to check my “liver function.” And, she said cautiously, “it will thin your hair.”

“Do you mean,” I said, “that I will have not only fat cheeks but also thin hair?”

She nodded. She said she was sorry. I thought of the women I had known whose hair had fallen out. I didn’t pay enough attention to them, I thought; I did not know.

The methotrexate not only thinned my hair, it changed its texture to something like dry acrylic. It would have made a good prayer shawl. But I started actually being able to taper the prednisone below 30 milligrams. And I, who have always been afraid of needles, got used to delivering my arm up to the nurses in the hospital’s lab every month.

In July we finally concluded that I could not travel to Claire’s wedding in Wyoming. We called her, and we all cried. I felt like—I was—a sick person, one of those who
“just can’t make it.” I had not had enough sympathy for them, those citizens of Oz.

We decided on a staycation, having never done one. The first week we visited local places we had always meant to see: the sand dunes north of Santa Barbara in Guadalupe (where
The Ten Commandments
was filmed); a wild beach where we walked against the wind. The second week we hired a friend’s housekeeper, and the three of us cleaned together—the ash from wildfires the previous fall was in every crevice of every corner. We lingered at Sears and finally bought a new refrigerator, a thing of beauty that was far beyond the word “appliance.” I got up in the middle of the night just to look at it.

When we were finished, the house felt full of light. It was inhabited.

I checked in again with Dr. Mesipam. I sat in his smallest examining room and asked him what I should do.

He replied, “Why not go to Mayo?” The legendary clinic in Minnesota.

“I have been thinking the same thing,” I said. “How do I get in?”

“My batting average is about fifty-fifty,” he said. “I mean, about half of the patients I have recommended get in. I have no idea what their criteria are.” He and Dr. Burks both offered to write a letter.

I assembled my records. I constructed a narrative. I waited. In three weeks I got a call on my cell phone from a number that registered 507, the area code for Rochester. His name was John, at Mayo. I was to FedEx my records.

W
E FLEW INTO
M
INNEAPOLIS
. It was the first time I’d flown in ten months. Dr. Mesipam said, “After all, Mayo is there to catch you at the other end.” I didn’t think about the nerve as I boarded the plane. I thought about the flight’s short duration and the Mayo Clinic at the other end. The people there who would catch me if I fell from space.

Rochester, Minnesota, lies about eighty miles south of Minneapolis. The day after we arrived, we drove the scenic route, down the Mississippi River, through Red Wing, home of the boots and shoes, where we stopped briefly and ate bratwurst from a street fair while sitting on a park bench a few feet from the river. Across from us were a tavern, houseboats, and a dock. Near us was a monument to those who lost their lives in a steamboat accident in 1890. Families on a summer cruise of the river, a barge towed behind the festive boat for the added people, a sudden wind. Whole families drowned. I read the monument about the accident with great concentration. I was paying attention to chance, how things come to us out of nowhere.

All Minnesota seemed to be outside in the unusually warm weather. Limestone cliffs rose up as we traveled farther south. The hillsides were red and gold. At Frontenac Park people sat at picnic tables overlooking the river; they
were waiting for eagles and migrating tundra swans. We turned inland.

Outside Rochester was a sign that advertised it as the Best Place to Live in America.

As we drove into the town, past the small malls, the big malls, the fast-food joints, and then a neighborhood of two-story midwestern houses with wide porches, we could see two gray and glass high-rise buildings at the center of town. As we grew closer, signs with the immediately recognizable three-shield blue logo appeared and then the words Mayo Clinic.

Thirty-five thousand people are employed by Mayo in a city of just over 100,000. The clinic itself is in these two twenty-story buildings, Gonda and Mayo. A thousand people a day pass through the doors.

The Kahler Inn and Suites was across the street and down the block from Gonda. It was dowdy and privately owned and had a large TV in the small lobby, around which people who did not look well sat on a large lumpy couch watching CNN. We checked into a spacious plain room and went outside to find something to eat.

Hardly anyone seems to actually live in downtown Rochester—the Mayo buildings and hotels and restaurants that serve the sick constitute almost all of it. The downscale Kahler Inn and Suites, the upscale Marriott and DoubleTree. (The Marriott had town cars with drivers waiting outside, groups of women in head scarves and men in dark expensive suits.) The streets at night seem to be populated only by patients and their families. That first evening, we were almost run over by two elderly women driving motorized sit-down scooters. Each of them had a
guard that propped her chin up, as if part of her chin or neck were missing or needed support. They were driving along the sidewalk at speed and talking about whether they were going to make the light. Each of them in her right hand held a lit cigarette.

On another block was a younger woman, chubby and dressed in a shapeless cotton dress. She too was sitting on one of the scooters, but she had a small calico cat in her lap. She smiled warmly. We smiled back. Later we would see a small group of people standing around her stroking the cat while she talked to them. The cat, I saw, was a lure.

We learned fast that almost everyone in the hotels was going to the clinic. There was really no other reason to be there. At every restaurant, at every hotel breakfast, at the smallest transaction (buying underwear, cough drops), the clerk or waitress would say to me, “Good luck,” and we both knew what that meant. Soon Vincent and I said it, too, when we got off an elevator, to the people still inside.

Our dinner that first night was at a café recommended by a friend of a friend, a woman who had a stage-three cancer and is alive, she said, because of Mayo. Being alive “because of Mayo” is a refrain. Another is “It took them twenty-four hours to diagnose it.” And although I don’t watch
House
or the other medical TV shows (I am too scared to), the shows must have added to the expectation, the answer that all of us who are patients here, seek.

Before I fell asleep, what came to my mind was that Rochester was a cross between Lourdes and
The Magic Mountain
. I had heard of so many patients who had traveled miles and miles and waited for months to get here on a pilgrimage to healing. And having seen the women downtown that night, I wondered if, like Hans Castorp and other
patients in
Magic Mountain
, there were people who were at home here or were, by a combination of illness and medical institutionalization, trapped. The whole town was Oz.

In the morning, we had our first two appointments, and the only appointments so far on my list. I was to start at the place where the symptoms started, in ophthalmology, and they would set up the next appointments within the clinic. I had heard of the famous Mayo team system but didn’t really know much more than lore.

I was anxious. I dressed carefully, trying to look like a real person, a professional, a person who was more than her illness, all of which disappeared as I walked into the building.

We entered through a tunnel from our hotel, one of the many makeshift subways that connect the buildings in downtown Rochester. (The reason for them would become unmistakably apparent when we returned the following March.) We followed a young couple pushing what looked like a lump of blankets in a wheelchair. One handled the chair and the other rolled an oxygen tank alongside. As we grew closer to the glass automatic doors that opened into the Gonda Building, more and more people were walking with us: the halt and the lame and the very sick. A man on crutches. A little girl with a bald head. A man with his whole leg covered in a bandage.

In the two-story entryway were huge “chandeliers,” or glass sculptures, made by Dale Chihuly—bursts of yellow and green that extended the length of the long bright hall. The glassmaker wanted them to be cheerful, he said, and I was glad that he had been commissioned to make these
blasts of warm color for this place. Compare them to the usual lights found in most hospitals and lobbies of medical clinics—the cottage cheese ceilings, the cold, weird lighting fixtures that seem to have been manufactured for medical offices alone. These were made by an identifiable human hand.

From the beginning, Mayo distinguished itself in this way: it struggled against the impersonal that is the ubiquitous nature of most medical institutions. The people who built and planned the Mayo Clinic and who, I imagined, kept working at it, were trying to combine both efficiency and humanity in every Mayo transaction. They did not always succeed at this almost insurmountable task, but not for lack of trying.