The Doheny Eye Institute was on the University of Southern California medical campus, at the edge of downtown L.A. near the Five freeway. The retinal center and the neuro-ophthalmology center shared the fourth floor.
In the waiting room were rows of comfortably upholstered chairs and a long row of windows. A man wearing bandages on his eyes was in a wheelchair next to a woman who was holding his hand. People were not reading magazines or watching TV. Or working on laptops. They were mainly staring into the space in front of them.
A polite young woman measured my sight. It had improved slightly from December. I felt a flood of relief. She dilated my eyes. She numbed them and took their pressures. She led me to another part of the floor, where a doctor shot dye into my veins and a young woman from Austria with a Spanish accent took fluoresceins. She measured the thickness of my retina with what is called an OCT. “Please try not to blink,” she said. Then she led me back to Dr. Rao’s section.
Dr. Rao’s fellow, Dr. J, took my “history.” He was tall and brash. He took what looked like haphazard notes. He would then report to Dr. Rao what he had heard me tell him, the bizarre system of “telephone” common in specialists’ clinics.
Dr. Rao was ten years older than the last time I had seen him, when he had told me to take vitamin E, a year before studies showed the vitamin improved circulation. Ophthalmology is one of the hardest of the medical fields, gathering the most intelligent and patient medical students usually at the very top of their classes. To then be at the top of the specialist field is to be very bright indeed and to be very patient. Dr. Rao is also warm and genial, born in India. When I first saw him, in the 1980s, I would list his name on other doctors’ medical information sheets under: “Your Doctors.” Very often a nurse or receptionist would mispronounce his name and then come very close to a snigger.
Dr. Rao greeted me in his round cheerful voice. I could glimpse, as the sleeves of his white coat drew back when he shook my hand, a beautiful Italian suit. I once walked past three of Dr. Rao’s white coats hanging off hangers, fresh from the laundry, and I felt as if the coats were him. He asked politely if he might look at my eyes.
“Hum,” he said as he looked through the glass. I remembered his voice from a decade ago, its soft human sound.
“The nerve is not inflamed now,” he said. “I do not immediately know what caused it. The uveitis—I wonder if it worked backward, along the nerve?” He sat with his hands in his lap looking at me. The retina was healthy, he said.
“What about the visual field?” I asked.
He said they would take that later, here, but from the reports I had sent him, it looked as if things were stable. Dr. Burks had said the visual field was about the only thing they had, it seemed to her, to measure how things were going.
“What about MS?” I asked.
“I don’t think so,” he said. “But you should have an MRI.” He suggested I see one of his colleagues, Dr. Q, a neuro-ophthalmologist, and he asked one of his nurses to call him.
Dr. Rao suggested I start tapering the prednisone. I was just getting ready to beg him to see me again, having experienced Dr. A’s “no follow-up,” when he said, “Please make an appointment for two months from now.” As he said good-bye to me, he held my arm.
Dr. J came back into the room after Dr. Rao had left.
Thinking of him as friendly and knowledgeable, I asked, “Is it possible that I have something called neuro-sarcoidosis?”
“You are like my mother,” he said. “You are looking things up on the Internet. No, it is not possible.”
Chapter 12
LIGHTS BEGAN TO FLASH at the edge of my eyes in February. At dinner at Ca’Dario with Vincent and Jodie, the rain pouring down in sheets, I looked outside at the street, and the puddles on the street were flashing violet. I put down the menu. I tried to behave as if everything were normal.
Flashing lights “show up,” said one report on the Web. “Patients have mentioned lights that flash” after an inflammation of the optic nerve. “Photophobias,” said one synopsis. “Photopsias,” said another.
Vincent and I drove down to see Dr. Q, the neuro-ophthalmologist recommended by Dr. Rao. Vincent had decided he wanted to be there for every new specialist. We got an early-afternoon appointment, and Vincent figured out a route that might avoid traffic. We’d take the Five.
Dr. Q strode into the examining room with his fellow, a mild woman who practically flattened herself against the wall. He examined me. He looked at my records. He announced in a grand, all-encompassing voice, that I had had a “one-time event.” It happens, he said, to people in their sixties. It would not happen again. I was greatly relieved by what he said, but I had learned, by this time, to allot a small part of myself to medical doubt. I asked him about the flashing lights.
He turned to his fellow. “Could they be … Charles Bonnet syndrome?” he asked her. She nodded carefully.
“Charles Bonnet,” he said, “discovered that persons who had had injuries to their optic nerve sometimes suffered hallucinations; they saw ‘echoes’ of things that were not there anymore.” He ordered an MRI.
We thanked him and walked out the door.
“It would be great if he’s right,” Vincent said, looking doubtful.
“Yes,” I said.
On the way home, we took the Five again. It’s a big freeway, four lanes each way. Near Burbank, I glanced over and saw, walking beneath the freeway wall, a hairsbreadth from the whizzing cars, a plump brown chicken, nonchalantly pecking at the ground.
I looked over at Vincent. He was driving, hands on the wheel, starting straight ahead. I hesitated.
Just before I was about to speak, he said, “It’s a chicken. On the freeway. Or maybe we both have Charles Bonnet syndrome.”
I asked Dr. Burks if this could be a one-time event. She looked dubious. But we went ahead with the MRI, driving down again one Saturday morning because “the machine was better” at USC than in Santa Barbara. Dr. Q left a message on my machine after he read it that the nerve was not inflamed. He would see me in six months. When I called back to ask him questions, his office took my number, but he did not return my call. His fellow called and tried to answer my queries, but then she graduated from her fellowship.
My world remained small. I could not travel on airplanes. I had to nap at least twice a day. I could not read or work for long stretches of time. I kept my job because I needed to, but it was like holding on by the skin of my teeth. The high doses of steroids made it almost impossible to concentrate. I worked with four other people at Patagonia on the environmental team, and they made room for me—they held me up. We’d had some practice: each of them had faced a trial. Falling was not unknown to them. Still, I understood later how much they had taken on without telling me, how well they covered the extra work.
After a second visit to Dr. Rao, I was waiting for a train in Los Angeles under Union Station’s beautiful carved ceiling. I had grown to love the station’s tiled floors, its old leather and wood armchair seating, its garden. Out of the corner of my eye, I saw a man in a soiled overcoat peering into a garbage can. He walked in front of me, and he had a face and body that I had last seen in Nicaragua in the late 1980s, a body not of this century. The men walking along a road near Managua had been bent over double by the bundles of wood on their backs. I had taken them at first for animals. There was nothing on this man’s face to cover his naked hopelessness.
My first impulse was to run after him and stuff some money in his pocket, but instead I just stood there. What was going on was something more than the usual hesitation I have before giving money to a stranger. The space between us was much smaller than it had been when I was in my former life. The world could discard me about as fast as it had (a long time ago) discarded him. I had watched people’s eyes pass over me, with my swollen, red cheeks and my slightly off-balance gait. I was sick and getting old. If I lost my job, if Vincent left me … it would take a while in my case, and it might never come to
what it had for this man, formerly a human being, but I saw the chute he had fallen down. It ran parallel, if at a distance from mine. We were both disposable.
I looked around, and with a burning hatred, I hated every single person who looked even remotely well in the whole station. I hated not only the young but the middle-aged, anyone who looked as if they were healthy. There they were, some of them talking on cell phones or just walking along, looking anxious or tense or smug. They don’t know! I hated everyone who was not sick or poor. And finally I railed at God, THE FATHER ALMIGHTY. Then it came home to me, fully and completely, why the creed was so wrong. God, the Father Almighty, was the God the empire liked and wanted to adopt as its own. God the King. God the Emperor. The God I hoped was somewhere (at the zoo?) and wanted to learn to pray (to? with?) was not that God. Not your grandfather’s God. I wanted another story. I needed another story.
I understood that the inflammation and its aftermath had caused, not only a sudden descent into a separate country but a break in the narrative of my life. The narrative had been onward and upward. The narrative was that I was working to be more successful, more powerful, possibly rich. I was, after all, an American.
In my packing and talking and traveling, hidden and quiet, was my desire to be successful or, at the very least, famous. When I was given an upgrade, I liked walking on the ridiculous patch of red carpet that United Airlines puts out for its first-class passengers. I liked sauntering past the rabble. I hungered after the Chanel jackets in the New York Times ads. I envied the writers who sold more books than I did.
It was, if you will, the official American story: The rich got rich, and we could all get rich, too. If we weren’t rich already, we were, as David Brooks once said, “Pre-rich.”
Every culture produces such a story. It runs (unconscious) under daily life. It takes a crack in it to reveal its presence. I was living in the crack.
While hoping to get rich is an old American story (just ask Henry James), it has gotten out of hand. My parents did not talk about real estate and money the way we do. They talked about a fulfilled life, a meaningful job. But now wanting to get rich, coupled with a consumer culture, smothers our ability to imagine other narratives. It’s like getting used to fewer and fewer trees, more and more foul air. Jared Diamond calls this “landscape amnesia.”
It was summed up by a sign in Zuccotti Park during Occupy Wall Street: WORK CONSUME BE SILENT DIE.
And then, along came October 2008, when what was revealed to us in stunning detail was what the theologian Walter Brueggemann once called “the abnormality that has become business as usual.” What was revealed was how banks and financial institutions, as Nicholas Kristof wrote in The New York Times, “socialized risk and privatized profits.” The underpinning of the official story was revealed in its callousness, corruption, and criminality.
The world that Jesus inhabited had its own version of this story: King Herod, the puppet of the Romans, taxed the poor into submission; the temple authorities collaborated with the empire. There was a hierarchy, a red carpet, special clubs. The rich got rich and the poor got poorer. And the suffering was ignored, papered over, invisible. Or the poor were blamed for their poverty; the ill were blamed for being ill. When Jesus said, “The poor will always be with you,” did he not mean, The rich will always be with you, and, thus, the poor? When he healed a blind beggar or fed thousands on a hillside or told a young lawyer a story about carrying a wounded Samaritan to an inn, he was revealing the suffering that was business as usual. He was writing it on the walls.
Later, when I could fly again but was relegated to steerage, I stood with the rabble while first class boarded on that little piece of red polyester. I knew I would not be walking on it anytime soon. It is so trivial, but what I realized was how incredibly insulting the carpet is. That it symbolized what a stupid place we have come to. I could not see Jesus walking (or kneeling) on that red carpet. As I stood there, I saw that there was a further piece to the get-rich story. As you climbed the ladder, you would leave the people who had been standing beside you. That was the underpinning of the story: you would get rich (or famous or whatever) and walk away on the carpet and leave your old companions—the ones who had held you up—behind.
As I came down from a short, easy hike, my left leg felt weaker than the right one, and a seizing electrical pain jolted its way through the right side of my head. Dr. Mesipam sent me to a neurologist, who ordered a lumbar puncture. MS came back on the radar.
I found myself in a white room with a wide white bed, one doctor and one nurse. I was in the usual nightie, the dispiriting uniform of Oz. I was cold.
(I know that many patients are tougher than I am, but sometimes I think people describe their experiences in Oz with stoicism in order to avoid that most onerous of accusations: self-pity. We are supposed to suffer the worst tests and “procedures” with resolve and bravery, or we will be someone who has self-pity. I am not sure this is a good idea. It makes us all have to be braver and more stoical than we may feel; it diminishes our need for support; and finally, it makes the medical world think the tests and procedures aren’t so bad, which is the worst result. And it’s part of the battle imagery so prevalent in Oz—witness those cancer ads for Sloan-Kettering.
(Be a wimp, I say to my fellow patients. Or cultivate something other than stubborn endurance. Cultivate compassion for yourself and for others. This is a hard world, Oz, and any way you get through is a triumph.)
The doctor pulled a machine, a version of a CT scan, until it hovered over my back. He was going to pierce my spinal cord with a needle and draw out fluid. He would find the spine with the machine, scrub some Xylocaine on the spot, and then punch through to it with a needle. I would feel “pressure.”
I did. He sat back. He was pulling out the fluid. We waited. It was slow, too slow, he finally said. He told me they were going to tilt the bed. I felt it lift and tilt downward, to force the fluid out faster.
Finally he said, in the tone one might have for a frustrating household project, “I am going to have to do it again.”
“Again!” I said.
“Yep,” he said. “I have to find a better place.”
This time it was more than pressure.
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.
The Moonlight Sonata at the Mayo Clinic Page 10
