My parents read to me nearly every night before I went to sleep. The characters in those books, whether real or imagined—Laura Ingalls Wilder in The Little House in the Big Woods; Ratty and Moley in The Wind in the Willows; Dickon and Mary in The Secret Garden—were alive. I knew they were different from the people who lived around me, in the flesh, but when my mother read to me the opening of The Secret Garden, I saw Mary, a little girl—pale, angry, alone in the middle of a big, empty house in India, with only a small green snake for company. I more than saw her, I knew her. She was me and not me. I didn’t question this, didn’t ask myself how it happened. I had an imagination, and my imagination met the imagined world of writers. Our minds seek, long for, must have, a story.
The imagination has no boundaries. It seeks the dark as well as the light. It loves the shadowed, the profane, the perverse, as much as the bright, the forgiving, the acceptable. During the Spanish Inquisition, the state and church (Queen Isabella and King Ferdinand and a pope under pressure from the two monarchs) censored Ovid, Rabelais, and Dante, but many scholars think the restrictions were ineffectual; stories, especially romances of chivalry, managed to sneak through the net.
When I was a child, my family didn’t attend any church regularly, but the stories from the Bible floated in the air of our lives, along with Roman and Greek myths: Jesus and the lepers, baby Moses in the basket in the river, Prometheus and fire. It did not matter whether the events in the stories actually happened or not, or whether the people had actually lived on the planet; what mattered was, like the stories in the novels read to me at night, that they were true (not literal—true).
My older brother, Kit, taught me to read when I was four, so I’d be ready, he said, for first grade. From then on I read books in trees, in old barns, on lawns, in backyards, on my mother’s bed, in my own bed late at night. I could pick up anything I wanted. When a writer asked me what I was reading when I was twelve, I said, pompously, The Rise and Fall of the Third Reich.
When I was older, I found the great writers. I read Tolstoy’s Anna Karenina and put it down and thought: How could he have done that? How did he know what a suicidal woman feels? How did he make me see and believe it? Later, when I wrote fiction, I saw that the lives of characters in a novel are partly the alternative lives the writer might have had and parts of the self (splintered, refracted, embellished): “Madame Bovary,” said Flaubert, “c’est moi.” I saw that in knowing them, my characters, I knew myself.
But now I could not read.
Part of the reason was the eye that had been “assaulted” (the right eye) tired very easily when I read with the left eye. (I could not actually read with the right eye; the letters were too distorted.) I felt it necessary to give the right eye a rest even though Dr. Lowe assured me it wasn’t necessary. I felt it necessary. I wanted to “reverse” the visual field. I also wanted to preserve the “good” eye, not knowing what had caused the nerve inflammation in the “bad” eye. That eye, too, tired easily. I wore my not-rakish patch on my right eye when I worked, briefly, at the computer and when I, briefly, watched the evening news.
I had no morning newspaper, no novel to take to bed, nothing to read while eating lunch. That whole world was suddenly gone. I had no characters living inside me.
Then I remembered the audible books I had sent my mother when her eyes finally succumbed to macular degeneration; her pleasure at listening to her old favorites (Rebecca, The Wind in the Willows). I signed up at a Web site and downloaded Middlemarch to my laptop and, in the evening, lugged it to bed with my earphones. Vincent looked over at me and the laptop.
“Isn’t that a little awkward?” he said.
“Yep,” I said, “but it’s fine.”
What we didn’t say was that I could not afford even a basic iPod because the doctor bills had begun to come in, and despite very good health insurance, the emergency room alone had wiped out my savings.
The next day I was lying on the window seat looking up at the Christmas tree, when Vincent walked in with a little white box and handed it to me.
I started to cry.
The envelope said, “N.G.” Inside the card read, “Dearest N, Merry Christmas but mostly a help-you-take-care-of-your-eyes gift. Love, V.” Inside the box was an iPod. It was silver. It was both light and heavy in my palm. I rushed to my study and transferred Middlemarch to it.
I lay down and listened to Dorothea’s story, her girlish idealism, her painful lack of consciousness, her grim marriage to Mr. Casaubon, the cold, jealous, deeply alone Anglican minister, twenty years her senior. Casaubon, I thought—how I disliked him the first time I read the novel in my twenties; how much more sympathy I had for him now.
When I finished Middlemarch, I listened to Tolstoy’s The Death of Ivan Ilyich. As Ivan Ilyich’s friends gather at his funeral, one of them, hoping to get away soon to his club, thinks, “He must have done something terribly wrong … to have died.” Then, in War and Peace, the doctors who come to treat Natasha Rostov prescribe different medicines almost every day and never talk to each other.
Doctors came to see her singly and in consultation, talked much in French, German, and Latin, blamed one another, and prescribed a great variety of medicines for all the diseases known to them, but the simple idea never occurred to any of them that they could not know the disease Natasha was suffering from, as no disease suffered by a live man can be known, for every living person has his own peculiarities and always has his own peculiar, personal, novel, complicated disease, unknown to medicine—not a disease of the lungs, liver, skin, heart, nerves, and so on mentioned in medical books, but a disease consisting of one of the innumerable combinations of the maladies of those organs.
The great writers spoke to my experience. They had found the words for my affliction and treated it with acerbic, bracing compassion. Tolstoy knew that doctors specialized in parts of the body and did not know how to look at it as a whole. He knew that people, fearing death, would try to blame death on the body in front of them. And the hope Tolstoy and Eliot offered was not tacked on, as an uplifting addendum, but was instead a satisfying resolution, born out of what it is to be human, out of deeply human hearts. They knew that we suffer and that each person’s suffering is both singular and particular and also commonly held, universal. They did not turn away from it. They did not urge me to “think positively.” (And Eliot, by creating Casaubon, gave me sympathy for that woman in Dr. Burks’s office, in her bright clothes and perfect coiffure: what fear lay under her bromide?)
Tolstoy and Eliot had generosity, irony, and hope—three basic tools, it turned out, that I would need for survival in Oz.
Chapter 10
I BEGAN THE ROUND of specialists right before Christmas. At the urging of Dr. Lowe, I made an appointment with a neuro-ophthalmologist at UCLA. Vincent drove me down because neither of us felt that I could drive alone, and we knew they would dilate my eyes. I had never gone to a medical appointment with Vincent, never imagined this taking place. Now I saw myself following Vincent around from doctor to doctor with the same vague, worn expression I had seen on the woman in Dr. Lowe’s waiting room.
My father had driven the back alleys of Las Cruces to avoid the police, as his driver’s license had long expired, to get my mother’s blood pressure medicine; Vincent’s stepmother drove Vincent’s father from Marin County into San Francisco for his lung doctor. Each day was planned around the doctors’ appointments, until the appointments were all that was left. One spouse shouldered the other—the two-person partnership. This would be our fate, inevitably, I now understood. That I had never recognized this before, never imagined it, was part of my former life, in that other country, from which I was now separated by the glass wall. What had I imagined when I thought of us growing old? I had not. “Let’s do this forever.”
We took the coast highway. I watched the sea, gray and dark green in the winter light. At UCLA what caught my eye outside the Jules Stein Eye Institute were birds of paradise in huge planters
and a man with a white cane. It was December 23, days before Christmas; the clinics were deserted. A solitary guard sat in a small office chair in an empty hall on the first floor. I remembered, as we went up in the elevator, that Jules Stein had been an impresario from Indiana who built a big band business into MCA.
Dr. Burks had said that I would have to pay attention to my symptoms because the tests were all negative. “We will have to rely on you,” she said. I had made a list that would later fill notebooks: headache, stiffness in shoulders, temple pain, fatigue, weight loss. I brought a list of medications. Insurance card. And also a copy of a novel I wrote, without quite knowing why. When we got to the fifth floor, I went to the bathroom and in the mirror saw my cheeks fat and red from the steroids, the face of a bloated drunk. I turned away from my own reflection. I had been a reasonably nice-looking woman and was vain. Now my looks had disappeared in a matter of weeks. I thought of the women who lost their hair, my mother in her wig. I felt a deep fear in my stomach: Vincent would be repulsed by my looks. He would find someone else. In the months to come, Vincent’s aunt, Malinda, who photographs everyone and carefully pastes them into albums, took no photos of me. I saw, later, how kind this was, how much she knew.
The waiting room was practically empty. I went to the reception desk, where the woman behind it ignored me. I cleared my throat. She went on working. I stood there hoping she was working on something important (resuscitation by typing?) until she, grumpy, asked me for my insurance card without looking up. I gave it to her, turned, and walked over to a worn but comfortable tan leather chair. On my new iPod, I listened to Alfred Brendel playing Schubert. I remembered watching him play his last, retirement concert at Carnegie Hall and how, as the ovations filled the hall again and again, he played again and again until his hands turned red.
A young, dark-haired woman called my name. Walking Vincent and me down the hall, she did not speak to either one of us. She ordered me to sit in a chair and dimmed the lights. When I told her I had a scar on the macula of my right eye and therefore needed to start the eye chart at a higher line than I would eventually be able to read, she ignored me. She tapped her pencil as I struggled with the chart. The sight in my right eye was 20/40 minus 1, the worst it had been in decades. She dumped us back in the waiting room without a word. Vincent read The New York Times, and I listened to Alfred, until another woman, older, nicer, placed us in an examining room.
A string of young residents, all of whom looked as if they would rather be anywhere but here (it was, after all, the holidays), did depth and color perception tests: Escher-like paintings with numbers hidden in dots of color and cartoon animals that popped up or did not. I had the dispiriting feeling of failing test after test. Like the blotches on the visual field, I saw what I had lost: I had lost color distinction in the right eye, I had lost almost all my ability to see red. Finally a young woman arranged herself in front of me, asked me to look at her nose, and held her long arms wide. She asked me to tell her the number of fingers she was holding up at the edge of my peripheral vision. This, I gathered, was the Jules Stein version of the visual field test. Vincent said later that she must have minored in modern dance.
They dilated my eyes. They numbed my eyes. They stuck the tip of a pen into the eyeball to take my pressure. Then they all trooped out, leaving me exhausted. Vincent immediately brought up the subject of what stoves I might want to replace our ancient one, then moved on to refrigerators and beds. Neither one of us had had the time to even look for replacements. Our icebox was freezing vegetables in their bin; our stove had to be turned up to 500 to roast potatoes. Then Dr. A, a tall man wearing a sagging suit, walked in. His eyes were intelligent and weary. The residents marched in behind him, like cadets on parade.
Dr. A asked me if I owned a cat. Had it scratched me? My cat doesn’t scratch me, I said, and understood from his expression that this was more information than he wanted. Red splotchy rash? He peered through the instrument at my eyes. He stood back and allowed the residents to take a look, one by one. Only one of them spoke to me. When the last of the six was ready, Dr. A touched my arm briefly, the only human contact I had, and said gently, “Just one more.”
Finally he stood back. Vincent had been taking notes and was ready with his pen.
“I am fifty-fifty,” he said, “inflammatory or circulatory. I can’t tell which. The nerve is no longer inflamed.”
“What leads you toward circulatory?” I asked.
“The pattern of the visual loss,” he replied. “The MRI.”
Then he stopped and looked away. I stopped, too, though I had more questions. The specialist’s time allotment, I would learn, is ten minutes. After that you are no longer a model patient. He wanted me to repeat the blood tests I had had when I first was diagnosed with uveitis, all of them. Send the results to him; he would send me his report in January.
I found myself thanking him profusely. After he left, I asked his nurse to give him the copy of my novel I had brought along.
When I called his office to ask for a follow-up appointment, I was told by a cross receptionist that Dr. A did not do follow-ups; he only did diagnoses. I never saw him again. This is common among specialists, as it turns out—the one visit, the “diagnosis” or lack of one, no follow-up, and the vague, noncommittal “report.” (According to The New York Times, specialists now outnumber internists two to one.)
I had had faith in Dr. A. I thought he would figure out the problem; that was the role, I thought, of a medical specialist. I thought he would marshal his considerable resources and solve it. But that piece of faith would soon vanish, for me and for Vincent. Several months later, when a friend asked Vincent how things were going, he replied, “She has an appointment with another useless world-renowned specialist.”
We walked out into the clear winter twilight in Los Angeles and down the parking ramp. We had been there three and a half hours. As we passed the birds of paradise, I felt a sense of being robbed of something.
It would take me a long time, almost two years, to figure out what it was. What kept returning to my mind was giving my novel to the nurse. Why had I done that?
As we got in the car, Vincent said, “Do you have to go through that every time?”
“What?” I asked.
He looked at me with concern: “What they did to you,” he said. “The eye chart, the dilation, the numbing, the pencil in the eye, those weird colored tests, the residents …”
“I haven’t seen an eye specialist in a while,” I said. “But yes, that’s the drill.” I thought to myself: Why is it the drill? Not so much the eye chart and tests, but the attitude and the numbers of people. The feeling of being a thing to test, not a person to heal.
I asked that question of a friend who is a doctor a few weeks later, and he replied, “Teaching hospitals are set up for the students, not for the patients.”
We drove home to a little trattoria Vincent had wanted to try—the first new restaurant I’d been in since early December—and split a giant, expensive rib eye. The room was brightly lit and full of people, and I felt as if I were living inside a kaleidoscope with my dilated eyes and steroid-filled brain. Vincent reached his hand across the table.
Three and half weeks after “it,” I had no diagnosis. The nerve was actually not back to normal (an MRI would confirm that) but was not noticeably inflamed. I was taking 60 milligrams of prednisone a day. The temporal artery biopsy (for autoimmune inflammation in the arteries) was negative.
Like other people who live a middle-class professional life, I had thought that I could manage to control or contain or overcome almost anything. I had known this so completely that I had not actually consciously thought it out. And because I have been a working journalist, I knew the power of connection. The person with the power over any given situation, the person with the information needed for the story, was only three degrees of separation, if that, away.
I had tracked down the people who harbored Patty Hearst when she was on the
lam, by sitting on a doorstep in San Francisco for three days. I had convinced a juror from the Dan White trial after their verdict to talk to me. (Dan White assassinated George Moscone and Harvey Milk in 1978.) I had talked my way past police barricades and through rioters burning police cars. I knew my way around.
I had found that studio in the Village; a friend knew a friend. At that time I had marveled at how easy it was, how small the circle. I had not fully understood that the circle was small because the circle of educated professionals is small. I had not considered what it was to not have these connections or any way of breaking in. To be, in a word, powerless.
Outside my close circle of friends and family, people seemed to believe that my medical situation could be managed, that all it lacked was information, that what I needed was …
“You should find …”
“Have you tried …?”
“How about …?”
Hanging up from their well-meaning phone calls, I would feel more isolated, more inside the glass wall than I had before we talked. They were trying to manage the situation. Things don’t happen out of nowhere. They have a cause. They have effects.
Their response was complicated by the lack of general knowledge regarding autoimmune disorders, not to mention lack of medical knowledge. Autoimmune disease, as Bevra Hahn, the head of rheumatology at UCLA, would later explain to me, is a situation in which the immune system—or antibodies—attacks the body’s own tissue.
In the medical literature, there is an almost literary term for it: “the failure of self-tolerance.”
Dr. Hahn’s research has led her to believe that autoimmunity is a disease of civilization. “The cavemen’s immune system was set on a hair trigger to attack infections, and they were exposed to infections every minute. But we are ‘too clean.’ We are not exposed to infections, especially as children, but we have the same immune system, which is looking for trouble. In autoimmune disorders, the antibodies are in overload; their regulation is wrong.” She went on to say that each of the immune diseases has a genetic component: the genetic predisposition appears, she said, to be contained in the target tissue. Each autoimmune disease—MS, lupus, rheumatoid arthritis—has its own bag of tricks. A friend who has MS put it perfectly: “You never know who is going to be in the guest house tonight.”
The Moonlight Sonata at the Mayo Clinic Page 7
