The Moonlight Sonata at the Mayo Clinic (14 page)

Finally he got enough fluid to send to the Mayo Clinic to be tested for oligoclonal bands, the gold standard for MS.

Vincent picked me up. I had to remain horizontal for four hours; otherwise spinal fluid could leak into the brain, and I would have a “massive” headache. Vincent would not allow me to stand up except to go to the bathroom. He served me roasted potatoes and salmon in bed and, to talk to me, knelt down on the floor and turned his head sideways.

I met with the neurologist. The test had come back negative for the oligoclonal bands, he told me; I could lay the fear of MS to rest. I thanked him. My symptoms were, or seemed, I said, neurological. The neurologist said I should stop worrying. It must be something farther down the nerve, he said, where we can’t see. And what would that mean? I asked him. Without responding to my question, he said, “Retrobulbar neuritis. Pretty direct meaning: behind the bulb, behind the eye.

“Some kind of inflammation,” he said, with a dismissive wave. “Behind the eye.”

A medical paper I read about retrobulbar optic neuritis said: “The doctor sees nothing and the patient sees nothing.” The doctor doesn’t see the inflammation, and the patient is not aware of it, and yet it goes on.

At that point I was too inexperienced. I could have asked: “What kind of inflammation? What do people do? What category does it fall under? Or when is that not MS?” Instead I said, “Oh.”

I asked Dr. Mesipam what retrobulbar neuritis meant
and he replied with a wry smile, “It’s inflammation, farther down the nerve, where he can’t see it.”

I thought at first that I should learn the medical words tossed at me:
retrobulbar neuritis, edema
. But I found that when I used them, many doctors frowned and pulled back.

Better to say “swollen.” Better not to refer to something found on the Internet.

The neurologist wanted to taper the prednisone again. Dr. Burks agreed, but she was worried about moving too fast. After all, she said, a refrain, we still don’t really know what we’re dealing with.

My former life had been fueled by adrenaline and anxiety, in equal amounts. I ran just ahead of what was overcoming me. When I took a day or two off, I was restless and bored, and the world was pale and flat. Glued to my screen, I lived in two dimensions. But now I was slower, and parts of the world, its creatures, its particles, started to enter my diary:
yellow-breasted birds in the plum tree. It’s quiet, as if summer were just around the corner
.

As I had nowhere else to travel, I watched the creek restoration’s progress. One day it was complete. The road was open, the equipment gone. A plastic green fence was stitched along the periphery of the area, to protect new native grasses and plants. I found a place where the fence ended and walked over to the creek.

I threaded my way past new hummingbird sage and penstemon. I could see the pool before I got to it. In the
clear winter light that marks February in California, when everything stands out as if it were posing for an Ansel Adams photograph, the pool was deep and green. Clean, brown sand lay along its edge. A sycamore tree, empty of leaves, stood across from me, its white-gray bark glimmering. Along the edge, and jutting into the creek, the restorers had placed large, flat rocks. I looked up and down the creek, and I could see a series of pools, a series of rocks. Should the steelhead ever return from the place of near extinction, they would have deep clear pools in which to spawn. I sat down.

For the first time in a very long time, I felt my shoulders relax.

I
T WAS NOW MID
-F
EBRUARY
. 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.”

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 to 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.