The Year of Magical Thinking

9

You’re safe, I remember whispering to Quintana when I first saw her in the ICU at UCLA. I’m here. You’re going to be all right. Half of her skull had been shaved for the surgery. I could see the long cut and the metal staples that held it closed. She was again breathing only through an endotracheal tube. I’m here. Everything’s fine.

“When do you have to leave,” she asked me on the day when she could finally speak. She said the words with difficulty, her face tensed.

I said I would not leave until we could leave together.

Her face relaxed. She went back to sleep.

It occurred to me during those weeks that this had been, since the day we brought her home from St. John’s Hospital in Santa Monica, my basic promise to her. I would not leave. I would take care of her. She would be all right. It also occurred to me that this was a promise I could not keep. I could not always take care of her. I could not never leave her. She was no longer a child. She was an adult. Things happened in life that mothers could not prevent or fix. Unless one of those things killed her prematurely, as one had almost done at Beth Israel and another could still do at UCLA, I would die before she did. I remembered discussions in lawyers’ offices during which I had become distressed by the word “predecease.” The word could not possibly apply. After each of these discussions I would see the words “mutual disaster” in a new and favorable light. Yet once on a rough flight between Honolulu and Los Angeles I had imagined such a mutual disaster and rejected it. The plane would go down. Miraculously, she and I would survive the crash, adrift in the Pacific, clinging to the debris. The dilemma was this: I would need, because I was menstruating and the blood would attract sharks, to abandon her, swim away, leave her alone.

Could I do this?

Did all parents feel this?

When my mother was near death at age ninety she told me that she was ready to die but could not. “You and Jim need me,” she said. My brother and I were by then in our sixties.

You’re safe.

I’m here.

One thing I noticed during the course of those weeks at UCLA was that many people I knew, whether in New York or in California or in other places, shared a habit of mind usually credited to the very successful. They believed absolutely in their own management skills. They believed absolutely in the power of the telephone numbers they had at their fingertips, the right doctor, the major donor, the person who could facilitate a favor at State or Justice. The management skills of these people were in fact prodigious. The power of their telephone numbers was in fact unmatched. I had myself for most of my life shared the same core belief in my ability to control events. If my mother was suddenly hospitalized in Tunis I could arrange for the American consul to bring her English-language newspapers and get her onto an Air France flight to meet my brother in Paris. If Quintana was suddenly stranded in the Nice airport I could arrange with someone at British Airways to get her onto a BA flight to meet her cousin in London. Yet I had always at some level apprehended, because I was born fearful, that some events in life would remain beyond my ability to control or manage them. Some events would just happen. This was one of those events. You sit down to dinner and life as you know it ends.

Many people to whom I spoke in those first days while Quintana lay unconscious at UCLA seemed free of this apprehension. Their initial instinct was that this event could be managed. In order to manage it they needed only information. They needed only to know how this had happened. They needed answers. They needed “the prognosis.”

I had no answers.

I had no prognosis.

I did not know how this had happened.

There were two possibilities, both of them, I came to see, irrelevant. One possibility was that she had fallen and the trauma had caused a bleed into her brain, a danger of the anticoagulants she had been given to prevent emboli. The second possibility was that the bleed into her brain had occurred before the fall and in fact caused it. People on anticoagulants bleed. They bruise at a touch. The level of anticoagulant in the blood, which is measured by a number called the INR (International Normalized Ratio), is hard to control. The blood must be tested every few weeks and in some cases every few days. Minute and complicated changes must be made in dosage. The ideal INR for Quintana was, give or take a tenth of a point, 2.2. On the day she flew to Los Angeles it so happened that her INR was over 4, a level at which spontaneous bleeding can occur. When I got to Los Angeles and spoke to the chief surgeon, he said that he was “one hundred percent sure” the trauma had caused the bleed. Other doctors to whom I spoke were less certain. It was suggested by one that the flight alone could have caused sufficient changes in pressurization to precipitate a bleed.

I recall pressing the surgeon on this point, myself trying (one more time) to manage the situation, get answers. I was talking to him on a cell phone from the courtyard outside the UCLA Medical Center cafeteria. The cafeteria was named “Café Med.” This was my first visit to Café Med and my introduction to its most noticeable regular, a small balding man (I assumed a Neuropsychiatric Institute patient with walkaround privileges) whose compulsion it was to trail one or another woman through the cafeteria, alternately spitting and mouthing enraged imprecations about how disgusting she was, how vile, what a piece of worthless trash. On this particular morning the small balding man had trailed me out to the courtyard and it was hard to make out what the surgeon was saying. “It was the trauma, there was a ruptured blood vessel, we saw it,” I thought he said. This had not seemed to entirely address the question — a ruptured blood vessel did not categorically rule out the possibility that the ruptured blood vessel had preceded and caused the fall — but there in the Café Med courtyard with the small balding man spitting on my shoe I realized that the answer to the question made no difference. It had happened. It was the new fact on the ground.

During the course of this call from the surgeon, which took place on the first full day I spent in Los Angeles, I recall being told several other things.

I recall being told that her coma could continue for days or weeks.

I recall being told that it would be a minimum of three days before anyone could begin to know what shape her brain was in. The surgeon was “optimistic,” but no prediction was possible. Many more urgent issues could come up in the next three or four or more days.

She could develop an infection.

She could develop pneumonia, she could develop an embolism.

She could develop further swelling, which would necessitate reoperating.

After I hung up I walked back into the cafeteria, where Gerry was having coffee with Susan Traylor and my brother’s daughters, Kelley and Lori. I remember wondering whether to mention the more urgent issues the surgeon had mentioned. I saw when I looked at their faces that there was no reason not to: all four of them had been at the hospital before I got to Los Angeles. All four of them had already heard about the more urgent issues.

During the twenty-four December and January nights when Quintana was in the sixth-floor ICU at Beth Israel North I had kept on the table by my bed a paperback copy of Intensive Care: A Doctor’s Journal, by John F. Murray, M.D., who had been from 1966 to 1989 chief of the Pulmonary and Critical Care Division at the University of California medical school in San Francisco. Intensive Care describes, day by day, a four-week period in a San Francisco General Hospital medical ICU for which Dr. Murray was at the time the attending physician responsible for all patients, residents, interns, and medical students. I had read this account over and over. I had learned much that proved useful in the calibration of my daily dealings with the ICU doctors at Beth Israel North. I had learned for example that it was often difficult to gauge when the time was right for extubation, the removal of an endotracheal tube. I had learned that a common barrier to extubation was the edema so predictably seen in intensive care. I had learned that this edema was less often the result of an underlying pathology than of an excess in the administration of intravenous fluid, a failure to observe the distinction between hydration and overhydration, an error of caution. I had learned that many young residents made a similar error of caution when it came to extubation itself: their tendency, because the outcome was uncertain, was to delay the procedure longer than necessary.

I had registered these lessons. I had made use of them: the tentative question here, the expressed wish there. I had “wondered” if she might not be “waterlogged.” (“Of course I don’t know, I just know how she looks.”) I had deliberately used the word “waterlogged.” I had noticed a stiffening when I used the word “edema.” I had further “wondered” if she might not be better able to breathe if she was less waterlogged. (“Of course I’m not a doctor, but it just seems logical.”) I had again “wondered” if the monitored administration of a diuretic might not allow extubation. (“Of course this is a home remedy, but if I felt the way she looks I’d take a Lasix.”) With Intensive Care as my guide it had seemed straightforward, intuitive. There was a way to know if you had made headway. You knew you had made headway when a doctor to whom you had made one or another suggestion presented, a day later, the plan as his own.

This was different. A certain derisive phrase had occurred to me during the edema contest of wills at Beth Israel North: It’s not brain surgery. This was. When these doctors at UCLA said “parietal” and “temporal” to me I had no idea where in the brain they were talking about, let alone what they meant. “Right frontal” I thought I could understand. “Occipital” I thought suggested “eye,” but only on the misconceived reasoning that the word began with “oc,” like “ocular.” I went to the UCLA Medical Center bookstore. I bought a book described on its cover as a “concise overview of neuroanatomy and of its functional and clinical implications” as well as an “excellent review for the USMLE.” This book was by Stephen G. Waxman, M.D., chief of neurology at Yale — New Haven, and was called Clinical Neuroanatomy. I skimmed successfully through some of the appendices, for example “Appendix A: The Neurologic Examination,” but when I began to read the text itself I could think only of a trip to Indonesia during which I had become disoriented by my inability to locate the grammar in Bahasa Indonesia, the official language used on street signs and storefronts and billboards. I had asked someone at the American Embassy how to tell the verbs from the nouns. Bahasa was a language, he had said, in which the same word could be either a verb or a noun. Clinical Neuroanatomy seemed to be one more case in which I would be unable to locate the grammar. I put it on the table by my bed at the Beverly Wilshire Hotel, where it would remain for the next five weeks.

On further study of Clinical Neuroanatomy, say if I woke in the morning before The New York Times had arrived with its sedative crossword puzzle, even “Appendix A: The Neurologic Examination” seemed opaque. I had originally noticed the obvious familiar directives (ask the patient the name of the president, ask the patient to count backwards from one hundred by sevens), but as days passed I seemed focused on a mysterious narrative, identified in Appendix A as the “gilded-boy story,” that could be used to test memory and comprehension. The patient could be told the story, Dr. Waxman suggested, then asked to retell it in his own words and explain its meaning. “At the coronation of one of the popes, about 300 years ago, a little boy was chosen to play the part of an angel.”

So began the “gilded-boy story.”

So far clear enough, although potentially troubling details (three hundred years ago? play the part of an angel?) for someone emerging from coma.

It continued: “So that his appearance might be as magnificent as possible, he was covered from head to foot with a coating of gold foil. The little boy fell ill, and although everything possible was done for his recovery except the removal of the fatal golden covering, he died within a few hours.”

What was the “meaning” of the “gilded-boy story”? Did it have to do with the fallibility of “the popes”? With the fallibility of authority in general? With the specific fallibility (note that “everything possible was done for his recovery”) of medicine? What possible point could there be in telling this story to a patient immobilized in a neuro ICU at a major teaching hospital? What lesson could be drawn? Did they think that because it was a “story” it could be told without consequence? There was a morning on which the “gilded-boy story” seemed to represent, in its utter impenetrability and apparent disregard for the sensitivity of the patient, the entire situation with which I was faced. I went back to the UCLA Medical Center bookstore with the thought of checking other sources for an elucidation, but there was no mention of the gilded-boy story in the first several textbooks I picked up. In lieu of checking further, I bought, since the afternoon highs in Los Angeles were by then in the eighties and I had flown west with only the late-winter clothes I had been wearing in New York, several sets of blue cotton scrubs. So profound was the isolation in which I was then operating that it did not immediately occur to me that for the mother of a patient to show up at the hospital wearing blue cotton scrubs could only be viewed as a suspicious violation of boundaries.