Nora Gallagher On Dealing With A Mystery Disease- by Nora Gallagher
I ignored the blur in my right eye. About two weeks later, I figured I had time, so I made an appointment with Dr. Lowe, my ophthalmologist, for December 1.
Our house is only a few blocks his office so I walked.
I normally saw Dr. Lowe every three months for a check up of an inflammatory disorder, uveitis, an inflammation of the uvea, the jelly part of the eye. I have had this disease or disorder for over twenty years in the right eye, with inflammatory episodes occurring sometimes three times a year. An underlying cause had never been found.
I read the eye chart. No change from the last time I’d been there: 20-20 in the left and 20-25 minus 2 in the right.
They dilated my eyes. They checked the pressures. They were normal.
In about fifteen minutes, Dr. Lowe swung into his chair, asked me to put my chin on the lip of the slit lamp, to look at his right ear, and then he put his eye to the lens.
The first indication that something was wrong was the length of time it took him to speak. He’s a thorough man, I told myself, and waited. Then, Dr. Lowe, his eye still fixed at the lens said, “Darn.”
I half heard him. Half of me registered that he had never said that particular word before to me, not even when there were cells in the vitreous indicating inflammation. The other half of me was rushing around like an anxious nurse, smoothing the bedcovers, restraining the patient, trying to make everything normal.
He switched to the left eye, made a careful examination then pushed the instrument aside. He said, carefully: “You have an inflamed optic nerve.”
What I knew then about optic nerves you could have put in a stamp box, but the tone was the kind you don’t want to hear from a doctor. The events that followed are all shoved together in my memory, some of them collapsed and bunched and some stretched out, the first indication that I had entered another geography where the ordinary rules (gravity, time) did not apply. I can’t retrieve a normal sense of the day. I must have asked him what he meant and he said, “Just a second. We need to take some pictures.”
He left the room for a few minutes and I sat in the large examining chair while my mind attempted to grasp the words. But my mind, as it turned out, was not capable of actually “grasping” what had happened.
Dr. Lowe called to the nurse, “let’s get a visual field test and some pictures.” Then he asked me, “Who is the rheumatoid doctor you are seeing?”
I told him Dr. Burks. (A young, slender woman. When we were done with my exam, we talked about clothes.) Dr. Lowe said he was going to page her. “You need some,” this phrase jolted me, “intravenous steroids.”
I walked down the hallway and into another room where I sat in front of a large box, put my chin on (another) platform for the visual field test. The nurse handed me a clicker. I was to stare straight ahead at a light while other, smaller lights went off at random in the field, like stars in a tiny universe. I clicked whenever I saw one.
I saw the dark patches on the sheet as it fed out of the machine. Very dark blotches on the lower right of the right eye. A blotch at the upper right. A stain near but not in the center. Dark areas near my nose. These were the areas where the lights had gone off and I had not seen them, the first test to verify damage in the peripheral vision. Dr. Lowe walked into the room and read the results. He said (practiced, gentle): “Do you understand that this damage is permanent?”
“No,” I said.
I walked down the hallway to the photo room with the fluorescein machine. The nurse put an IV in my arm, released the dye into my vein; then Dr. Lowe snapped photos as the dye entered my veins. He showed me the photos of the nerve. A stalk with a head, partly flared out. Like a dandelion, I thought, part of it had gone to seed.
He left me there for a minute or two, returned and said, “I can’t seem to reach Dr. Burks,” he said. “Do you know where her office is?” His tone was urgent.
“Yes,” I said.
I put on a pair of the dark glasses they give you in eye doctors offices that make you look like a clown and walked out the door. As I crossed the street to Dr. Burks office, a group of doctors walked past me toward the hospital. A couple of kids whizzed by on skateboards in front of me–just normal kids–but I drew back from them, as I had seen elderly men and women retreat from what was for them sudden danger.
It was then that I had the uncanny feeling of being behind a glass wall, that had slid down out of the sky and separated me from the rest of the people on the street. There they were: walking, skating, eating, opening a window, oblivious. There I was. Carrying my eyes.
We were in different countries, separated by this clear, transparent wall. I could have tapped it, the way the man did in the old Colgate commercials.
The doctors and the boys on the street seemed to be moving faster than normal. They sailed past me because they had somewhere to get to. I knew this, because I had been them, three hours before.
In the very early days of uveitis, I had had to think about, here is the word, blindness; I had read the statistics, looked up the studies. But as the years went by, and Dr. Lowe and I dealt with it, I had gradually let that fear fade to where it is for most people, not on the horizon, not a possibility.
What came to my mind as I walked toward Dr. Burks’ office was how, as a child, in New Mexico, I had been invited to piñata birthday parties. They hung the paper bird or star from the ceiling or outside, and then we kids took turns swinging at it with a baseball bat. Pretty straightforward. Only before you took a swing, they put a blindfold over your eyes.
I remembered the way the rooms, full of kids and adults and candles and cake suddenly disappeared when the adult put the cloth over my eyes, and the disorientation of not only walking but swinging without being able to see. How my body disappeared. I did not allow myself to go any further with these thoughts. I had seen the dark patches on the visual field. Dr. Lowe had said, with relief, “Still on the periphery. Not in the center.”
I walked up the sidewalk to a little cottage that Dr. Burks had made into her office and opened the door. Dr. Burks, her blonde hair cut to her shoulders, her fine-boned face a trace older, came out of her office. She was holding half a sandwich in her left hand with a bite taken out of it, and fiddling with a small electronic thing in her right.
“My pager,” she said to me and tried to find a place to put the sandwich so she could shake my hand. “Something must be wrong with my pager.”
The bite in her sandwich was the first article of what became a collection. Next, the rumpled suit of the neuro-ophthalmologist at UCLA; the linted overcoat hanging on the hook in Pulmonary: Mayo Clinic. My eye went to the flaw in them or at least the part (bite, teeth, sandwich) that announced they were human, these… high priests of the country I now lived in.
Dr. Burks told me she would call Dr. Lowe. I sat down in the waiting room.
When she returned, she said, “I can’t do the intravenous steroids in my office today. I am sorry. I have to send you to the emergency room.”
Get a blood sample first, she said, handing me a sheet for the lab.
The emergency room was just down the block but of course it meant that I would join the very sick, the bleeding, the accident victims, and, like many emergency rooms, it was full of paperwork, understaffed and getting out of it was like getting out of jail.
I walked through the double doors. My husband arrived just as I sat down in a little plastic chai. I had waited and waited for him and had not known I was waiting for him until he walked in and I started to cry.
He sat down, took hold of my left hand and at the same time, a nurse placed a bracelet with my name and date of birth around the other wrist.
“We have you in the system,” she said.
Adapted from Chapter 3 of Nora Gallagher's Moonlight Sonata at the Mayo Clinic (Knopf, May 21, 2013).