Extrait
Chapter One
The Onset of an Illness
My father was diagnosed with Alzheimer’s disease in 1994 when he was eighty-eight years old. He was a neurologist, with an extensive practice in psychiatry as well, and had taught for many years at one of Harvard’s major teaching hospitals. It was one of the doctors he had trained who made the formal diagnosis of his illness.
The earliest signs of problems with his memory appeared about four years before. There would be times when he found it difficult to summon up the name of someone he knew well. Now and then, he’d also lose his purchase on a set of facts with which he wanted to support an argument. At other times, he’d briefly lose his sense of continuity in the course of what was otherwise a cogent conversation.
But my father had tremendous social competence. He’d navigate these awkward moments with congenial ease. He’d smile at his own mistake, then offer me perhaps a glass of brandy, and sit down and question me about my work, or tell me of a book that he was reading, or share with me an anecdote about his own career.
Sometimes he would light his pipe. (He liked to take his time packing the tobacco.) The aroma of the smoke as it rose up about him remains in my memory, comfortably intertwined with the sense of relaxation, confidence, and calm that I identified with all those other quiet and consoling conversations we had had over the years.
Then, in 1991, he started to get lost at night when he’d go out to take a walk in Copley Square, which is in the neighborhood of Boston where he and my mother lived. He’d come home three hours later and report perhaps that he had made friends with a couple visiting from London or Geneva, or that he had been at Buddenbrooks, a bookstore that was close to his apartment, and had had a conversation with a foreign student whom he might have met there. My mother would worry terribly, of course, when he was gone so long. His interesting narratives, I thought, were meant to reassure her.
In spite of his confusions, he continued to try very hard to get some work done every day. He had given up his medical practice by that time, but he was determined to complete some papers he’d begun— summations of ideas that he’d developed in the course of his career on the neurological and psychiatric origins of certain forms of pathological behavior. A friend of mine, a teaching assistant at a local university, was helping him to organize his thoughts and bring coherence to his writing. On occasion, when my father asked, I would help him too.
It was not long after this, however, that my father’s restlessness would overcome his capability for concentration. After an hour or two of work, he would push the pages aside, get up from his desk, put on his jacket and an overcoat, if it was cold weather, go down to the lobby of the building, and head off into the nearby streets for another of his evening journeys.
One night in 1992, he asked me to sit down with him in a room of his apartment that he’d been using to store an old examination table and some other items from his former office. He said there was something he needed to discuss with me. He told me that he hadn’t yet decided whether it was wise to discuss this with my mother.
After he had closed the door, and both of us were seated, he started to lay out to me, in fairly graphic terms, what he described as “new and more specific indications” of problems he was having, which, he said, were “clearly neurological.” He checked again to be sure the door was firmly closed and then began explaining to me what he meant by “more specific indications.”
He said that he’d been having “spells”—he added that he did not mean by this the incidents of memory loss, which he called “amnestic spells,” but something “of a different order altogether.” He spoke of these as “brief attacks of interrupted consciousness” during which he recognized “a sudden cutoff from my own surroundings,” “a definite blocking of ‘capacity,’ ” lasting “maybe only for a millisecond or for several seconds or a trifle more.” These episodes, he said, had been preceded in each instance by “an aura of impending danger” that he likened to the sense of warning epileptics often feel just prior to a seizure.
He did not say this with the urgent sense of self-concern one might expect a series of events like these would ordinarily arouse. Instead, he spoke as if he was attempting to position these events at a distance from himself, so that he could speak of them with the detachment of an interested observer.
“I can pinpoint this as a neurologist,” he said, and he speculated that his recollection of what he’d been observing in himself might hold potential value for clinicians and researchers. For this reason, he plugged in his office tape machine, which he had used to dictate letters and reports on patients he was treating, and he recorded the remainder of our conversation.
He said that the amnestic spells were “clear-cut indications of degeneration of the cells in the cortex of the brain and in the hippocampus,” and he showed me by the placement of his hand exactly where the hippocampus lies. He speculated also that “mini-strokes of very short duration,” which he termed “a vascular phenomenon,” were in all likelihood the reason for his episodes of interrupted consciousness.
Even more specific was the detail that he brought to the portrayal of that aura of anticipation that preceded this. He described it as “a feeling of uncommon and uncomfortable heat, ‘a hood of heat,’ as it were, that someone or some unknown force is drawing down over my forehead and my eyes . . . , as far down maybe as my chest or throat,” and in another and, to me, more memorable phrase, “a feeling of impending desecration of my own autonomy—a premonition of my imminent removal from contextual reality. . . .”
During that experience, or intermingled somehow with the loss of consciousness that followed, my father told me he was suddenly aware of “a very bright light,” like that of “a locomotive bearing down upon you in a station.” But then, after a moment of reflection, he corrected this from singular to plural—“No. Not a single light. Many lights”—and then, as if he was, step by step, retrieving the experience with more and more precision, he said, “I’m now recalling it more clearly. This was not a static light. It was more like flashing lights, coming up in rhythm. Thousands of lights shooting upward . . . and symmetrical. I remember that this frightened me. I needed you to know this.”
It was the first time in the conversation that he let himself concede that he had been alarmed by this experience. “Those flashing lights are warnings of irregular electrical activity in the neurons, or between the neurons, which may terminate quite rapidly—or may not. In my case, it ended very quickly.”
In the most recent incident, he recalled, “As I was coming out of this, I was aware of being very cold. There was cold sweat on my upper lip. Your mother was with me. She could see me shivering.”
When I asked him where he was, he said, “In a restaurant. We were having dinner.” As the attack subsided, he went on, “I heard a loud voice. ‘Harry, are you hearing me?’ ” Although my mother realized that he wasn’t well, he did not reveal to her what he’d just been through, because, he said, “Your mother’s constant worrying is worse than anything my hippocampus may intend to do to me.” I hoped my mother wasn’t listening outside the door while he was speaking. . . .
Having said this much, he seemed to be relieved, and he fell into a more reflective and more contemplative state of mind. Speaking now with less of the alarm he had displayed a moment earlier but once again in the more measured tone with which he had begun the conversation, he speculated that the light phenomena he had recalled (those “flashing lights coming up in rhythm . . . and symmetrical”) “would have to have emerged from the occipital”—“from the posterior of the occipital,” he specified, which he then explained to me, as if I were his student in a class on physiology, “is the region of the brain that processes our visual experience.
“This part,” he said, “is something of a puzzlement. It’s something that I’ve never seen in any of my patients. . . .”
At that point, I suggested—not without some hesitation—that perhaps he ought to speak about these episodes with one of his colleagues. I asked him whether it was wise for him to try to fill the role of being his own doctor.
He looked at me for a long moment, searchingly, it seemed. Then he said that he intended to talk with a neurologist with whom he’d consulted on many of his cases—“I think I told you he was once my student”—but he took the opportunity to entertain himself by remarking that, although the man in question was “very bright” and “top-rate in the field,” he was “a peculiar fellow, humorless and dour. Always was, as long as I have known him. I used to want to ask him what it’s like to go through life without a personality.”
He told me, in any case, not defensively or angrily but simply as a statement of determination, that he would see him at a time of his own choosing. “I want to ask you not to pressure me about this.” He added that his confidence that I’d respect his judgment was precisely why he’d had this conversation with me, and not with my mother.
He waited another year and a half, but when he knew the time was right he phoned his younger colleague and set up the consultation. There were no surprises. He knew what he would hear. The diagnosis by his former student was simply confirmation of what he already had discerned.
Chapter Two
The Ends of Days
My father continued to live in the apartment for two years after that. It wasn’t easy for my mother as his restlessness intensified and his memory progressively declined. The friend who had been helping him to organize his writings began to stay there overnight to relieve my mother’s burden and to help my father deal with his confusions.
There were days when he would seem almost clear of mind. His conversational agility had not departed him. When he was in a tranquil mood, he could still be courtly with my mother. For all the tensions that simmered up between them, she didn’t want to lose him.
Then, in 1996, he fell in the street in front of their apartment building on a rainy evening. A police car took him to the hospital. He had suffered a displacement of his hip. After surgery, when he came out of anesthesia, he had lost almost all recognition of what had happened to him, what his present life was like, or even where he lived.
After several weeks had passed, he regained a number of these memories, as well as a partial understanding of the situation he was in; but the time in which he’d been under anesthesia seemed to have left its permanent result in an unmistakable reduction of his cognitive capacity. He had to be placed in a rehabilitation center after surgery, and then, because of the suddenly accelerated diminution of his competence, I had to move him to a nursing home.
I was somewhat on my own in making these arrangements. Although I have an older sister, she had moved away from Boston more than forty years before and had settled in the Midwest with the man she married. She had two children (they were adults now) and an extended family of her husband’s relatives, and many obligations and demands upon her time far from Massachusetts. For these reasons among others (my father had appointed me to be his legal guardian), decisions about choosing the right nursing home, working out the numbers for the costs this would entail, and making it a smooth transition fell to me, as did later choices that affected his well-being. My mother, of course, guided me as best she could in most of these decisions.
In the following month, my mother asked me to come in and try to sort out some of Daddy’s correspondence and his other papers. Several years before, he had sent me most of the case histories and related documents from his medical career for safe-keeping in my home, where they remained in large sealed boxes I had never opened. But there were other items he’d left here in his desk and in a metal filing case in a corner of the living room.
While looking through these documents, I found a picture of my father as a child. The photo was from 1912, when he was six years old. He was wearing knickers and a long-sleeved shirt, leaning against his father, who was wearing a formal-looking suit, a shirt with a round collar, and a broad and thickly knotted tie. My father’s hand was holding his father’s hand. The photo had a brownish tinge.
My mother was older than my father. He was ninety when he went into the nursing home; she was ninety-two. Although her body had grown frail, she was still a relatively healthy woman and still sharp and lucid in her thinking. But when my father had to go into the nursing home I saw a lost look in her eyes I’d never seen before. When I was sitting with her in her bedroom later in the week, she looked away from me, gazing out the window, across the river, at the Cambridge skyline, for the longest period of time. I had to speak in a loud voice to bring her back so she would see that I was there and speak to me directly. I showed her the picture of my father that I’d found. She said, “Your grandfather was a handsome man, but no man that I ever met was as good-looking as your father!”
My grandfather had come to the United States ten years before that photograph was taken: the start of a century that now was nearly at its end. He had grown up in a village in the Ukraine, which was part of Russia then. My grandmother followed him two years later on a ship from Rotterdam to Boston.
Grandpa was a tailor but was earning very little money at the time when she arrived, so she somehow managed—I still do not know how—to rent or lease a tiny store where she sold eggs and milk and ice and soda, which was known as “tonic” in those days, and some other groceries. I was close to my grandmother when I was a child. She lived on Seaver Street in Roxbury, which had been a mostly Jewish neighborhood until recent years. When I was at Harvard College, I would sometimes visit her on Friday nights.
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