Chapter 13
IT WAS NOW MID-FEBRUARY. Vincent and I were united in our desire to discover what had caused the nerve inflammation, and how best to treat it.
I sensed that many of the people around us, apart from those closest to us, wanted us to “move on.”
“I’ll bet this is just about the nerve and nothing systemic,” a friend said. I wondered if he did not know how to deal with something so … what was the word? Ongoing. Neither did I.
Illness, like other parts of the official story, was something you got over. It was a challenge you overcame. You were big, it was small. I knew this was not the case. It was big, you were small. The medical world was full of mystery and confusion. Doctors were often baffled; the system of specialists who did not follow up on patients made it worse.
I imagined the lives of doctors, these people who worked in Oz but were not sick. How did they manage? How did they defend themselves against the fear and vulnerability and illness that surrounded them, the sure knowledge that it would happen to them (they know the body, after all), the slow, inevitable slide toward death? (I had a moment in a doctor’s office of imagining that she saw me from the inside out, like the pictures on examining room walls: the lower intestine, the pancreas, the gall bladder.)
When a doctor did not know what was wrong or felt on tenuous ground, I discovered, he or she often became irritated with the patient. It was your fault that you had a mysterious disease.
When I told a resident at Doheny that the bright blobs of color were increasing, he replied, “Your vision is the best we will see today.” (A coincidence, Vincent said later. “Yours was the worst bedside manner we saw all day.”)
The more experienced and confident the doctor, the less defensive he or she was. The doctors who managed to be the least defensive were the men and women who worked in autoimmune disease.
An expert in rheumatology at UCLA ordered more blood tests from her own lab, which, it turned out, was a better lab than my local one. (A surprise: some labs are better than others.) She ordered, without telling me, a test for neuromyelitis optica, or Devic’s disease, an autoimmune disorder that attacks the eyes and spinal column. Devic’s can blind a person, lead to seizures and paralysis. Dr. Hahn knew there was a new, definitive blood test for it. Only when it came back negative did she tell me of her concern.
Dr. Hahn asked what I did for work and inquired about my novel. I told her it took place in New Mexico when they were building the atom bomb. I would send the book to her, I said, feeling sure I would not hear of it again. The next time I saw her, she told me she had read it with pleasure and that Arthur Compton, the physicist, had been her patient in St. Louis toward the end of his life.
She told me that she did not know exactly what I had but wondered about a rare lung autoimmune disease. She would ask for a consultation with a pulmonary specialist at UCLA. He never replied.
I still had the seizing electrical pulses on the right side of my head, especially after exercise, and bursts of electricity, like a burst of a burn, in my legs and in my hands. I had pain at the back of my head and in my temples. My visual field deteriorated when we tapered the prednisone. The weird blobs of color continued at the periphery of my right eye and sometimes, frighteningly, at the edge of my left, “good” eye. I would be walking to the park, and what seemed like the northern lights would go off at the edge of the eye. New sharp lights began to appear closer to the center of my vision, bright red stars. Dr. Rao ordered a blood test for antiretinal antibodies, and I tested positive for two. Now I was in a zone where almost no doctor had experience.
“What are these new antibodies?” I asked Dr. Hahn as she faced me, feeling along my throat.
“Another thing, maybe.”
“Is it one of those things in the gray zone?”
She looked up and into my eyes. “Very gray.”
It was now spring. I made an appointment with Dr. Mesipam and sat in his waiting room in a soft, overstuffed chair. A man near me was watching the stock market on his iPad. His wife, wearing a tawny cashmere sweater and soft sweatpants, had a bruise on her face from falling, she told Sarah, the receptionist, after being released from the hospital.
I told Dr. Mesipam that I had been thinking about how so many people were sicker than I was. Maybe I should give up searching for a diagnosis. “After all—” I started.
He interrupted: “Just because you are walking around doesn’t mean you aren’t sick,” he said. “This is about your sight. It’s about your eyes.”
Meanwhile daily life went on as much as it could. In my notebooks were questions regarding our small nest egg, lists of what kind of headsets to buy to work with Skype, followed by “lesions on nerve, scars.” Then, “Blue Star stoves.”
Merrill Lynch
Toilet Paper
Laundry Soap
Blood Test
Other, larger questions loomed. “If we don’t go to Maine” was written in one notebook. “What about Claire’s wedding?”
The right words and the wrong words continued to preoccupy me as never before, even after thirty years of writing. The right word pierced the wall between my world and the other one. The wrong one hardened and reinforced it. The larger world that I was no longer a character in contained many wrong words. There were of course the words of ads and commercials, which seemed to be taking place not only in another country but on another planet, but also the words people said in passing: “Hang in there.” “How are you?”
Along with people who sent the wrong words in my direction were the people who used the right ones. My friend Harriet referred in an e-mail to my “living nightmare.”
“I’ve been thinking of you,” said my friend Elizabeth, whose sister had been ill for years. “As I walked in the park yesterday, I thought of how we are all so fragile, so vulnerable.” What she said not only contained the word we but also was a recognition of our tragic actual reality. The thing I was experiencing that most people wanted not to see.
Not to see that reality, I understood, was not to see me.
I once interviewed Jews who had recently emigrated from Russia in one of the openings in the Cold War in the 1980s. Many of them had survived the siege of Leningrad. They were living in a retirement home in Denver. One of them took me aside after I had been there for a few days and said, “Tell me, Nora. Is everyone in America always fine? I ask someone how they are doing and they reply, always, ‘Fine.’ ”
I explained to her that this was a commonplace; a custom, it meant nothing. Relief showed all over her face.
“Ah,” she said. “That’s good. Because I am rarely fine.” (Later, whenever they saw me, they would chorus: “How are you? We are fine!” and then laugh uproariously.)
I missed them, I thought. These were people who understood not fine.
After several months of not going to church, I felt aimless. And I missed communion.
I decided to return to the base community, a small group of people who tried to follow a pattern of reading the Bible like the base communities formed in Latin America in the 1960s. After the Latin American bishops conference at Medellín, Colombia, in 1968, base communities became part of liberation theology: the theory was that God has a “preferential option” for the poor and the outcast over the wealthy and powerful. Liberation theology, in turn, was influenced by Paulo Freire, a Brazilian, author of Pedagogy of the Oppressed. Freire created a way for peasants to learn how to read and also to recognize the constraints placed on them.
A story goes that one of his students, a peasant woman in Rio Grande do Norte, read aloud a newspaper article about the exploitation of salt in her area. A visitor asked her, “Do you know what exploitation means?”
She replied, “Perhaps you, a rich young man, don’t know. But I, a poor woman, I know what exploitation is.”
The base community at Trinity met on Thursdays at noon, read the gospel story for the next Sunday, then talked about its meaning in their lives. They asked how it was speaking t
o each one of them. What did it ask them to do? Sometimes they asked themselves which person in the story of the gospel was the person with whom they most identified. They were hardly powerless peasants trying to understand the workings of God in their daily lives, or how this might relate to a larger justice, but I had been in a base community before, and I knew it was a place to talk seriously with a group of people about how to live. What followed the conversation was a brief communion, using the “reserved sacrament,” wafers and wine that had already been blessed by a priest. We passed them around to each other.
The base community was mainly a middle-class crew: a retired professor of social work; a professor of classics; my old friend Ann Jaqua, a spiritual director; a real estate appraiser; a friend who grew up in the South, a Methodist; another who grew up in an evangelical church but was gay and had to leave.
The New Testament reading the first week I returned was about a man who was ill and lying beside the temple pool. An angel of God descended unannounced into the pool and “roiled the waters.” If you jumped in while the waters were roiling, you were healed.
The problem for this man was that he could not walk or, presumably, roll, so someone else was always getting there before him.
He had been there for thirty-three years.
As we went around the table, the other people were, to my amazement, critical of the man.
“Why didn’t he get some help?” one asked.
“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.
The Winter’s Tale was important for two reasons: it represents real, pointless human malignity, and it also enacts a kind of resurrection scene when the statue of Hermione comes to life. The Tempest was important for a similar and a new reason. There is all this human enmity in the play, and the process the play ritualizes leads to a deep acceptance/forgiveness that our liturgy only performs in a thin, pro forma way. The other thing, new to me, was the transformation Prospero goes through. The standard rap on Prospero is that he is like Shakespeare, manipulating all the characters in a meta-theatrical event. What struck me really deeply in 2008 was the way in which Prospero himself is healed by the ritual. He is able, at the end, to throw off his power and forgive those who have betrayed and wounded him. I found both plays extremely powerful, much more so than chapel. So did the students.
I think part of the power of the plays is the way they represent both the depths of human sin and the power of a new community “based on trust instead of threats,” as W. H. Auden says of Measure for Measure. Part of what I had to do at the seminary was find a way to give up being enraged at my predecessors for digging us into this mess.… At the end, you have to assent to life and to what is. The Shakespeare plays helped me (and the entire community) do that in a way the liturgy really couldn’t.
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 h
im 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.
Chapter 14
WE FLEW INTO MINNEAPOLIS. 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.
The Moonlight Sonata at the Mayo Clinic Page 11
