The Theft of Memory: Losing My Father, One Day at a Time, by Jonathan Kozol
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The Theft of Memory: Losing My Father, One Day at a Time, by Jonathan Kozol
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A Library Journal Best Book of 2015National Book Award winner Jonathan Kozol is best known for his fifty years of work among our nation’s poorest and most vulnerable children. Now, in the most personal book of his career, he tells the story of his father’s life and work as a nationally noted specialist in disorders of the brain and his astonishing ability, at the onset of Alzheimer’s disease, to explain the causes of his sickness and then to narrate, step-by-step, his slow descent into dementia. Dr. Harry Kozol was born in Boston in 1906. Classically trained at Harvard and Johns Hopkins, he was an unusually intuitive clinician with a special gift for diagnosing interwoven elements of neurological and psychiatric illnesses in highly complicated and creative people. “One of the most intense relationships of his career,” his son recalls, “was with Eugene O’Neill, who moved to Boston in the last years of his life so my father could examine him and talk with him almost every day.” At a later stage in his career, he evaluated criminal defendants including Patricia Hearst and the Boston Strangler, Albert H. DeSalvo, who described to him in detail what was going through his mind while he was killing thirteen women. But The Theft of Memory is not primarily about a doctor’s public life. The heart of the book lies in the bond between a father and his son and the ways that bond intensified even as Harry’s verbal skills and cogency progressively abandoned him. “Somehow,” the author says, “all those hours that we spent trying to fathom something that he wanted to express, or summon up a vivid piece of seemingly lost memory that still brought a smile to his eyes, left me with a deeper sense of intimate connection with my father than I’d ever felt before.” Lyrical and stirring, The Theft of Memory is at once a tender tribute to a father from his son and a richly colored portrait of a devoted doctor who lived more than a century.
The Theft of Memory: Losing My Father, One Day at a Time, by Jonathan Kozol - Amazon Sales Rank: #244405 in Books
- Brand: Crown
- Published on: 2015-06-02
- Released on: 2015-06-02
- Original language: English
- Number of items: 1
- Dimensions: 8.50" h x 1.11" w x 5.77" l, 1.25 pounds
- Binding: Hardcover
- 320 pages
The Theft of Memory: Losing My Father, One Day at a Time, by Jonathan Kozol Review “Among Jonathan Kozol’s gifts as a writer is his ability to enter the world of his subjects, to live in the country of their experience and to tell their stories with clarity and compassion. This beautifully told personal account is further enriched by an abiding family love.” —Washington Post“Poignant...Less about the loss of memory than the effort to create a testament to forgiveness and love.” —Boston Globe“Heartwarming...The Theft of Memory celebrates the bond between father and son in thoughtful, often beautiful prose.” —Milwaukee Journal Sentinel“The author’s approach is shrewd yet warmly empathetic; he is curious about how the mind’s gradual breakdown exposes its machinery, and raptly attuned to the emotional effects of these changes on his parents and himself. The result is a clear-eyed and deeply felt meditation on the aspects of family that age does not ravage.” —Publishers Weekly [starred]“Readers familiar with the emotional toll exacted by a loved one with Alzheimer's will embrace Kozol's nostalgic, often heart-wrenching narrative as an important addition to the genre. A compassionate, cathartic, and searingly intimate chronicle of a crippling condition.” —Kirkus Reviews [starred]“[A] beautifully written love letter.”—Booklist [starred]“The Theft of Memory is a stirring, at times heartbreaking book about a brilliant doctor’s valiant fight for his dignity following a devastating Alzheimer’s diagnosis. Jonathan Kozol delivers this compelling narrative of his father’s life and final years with extraordinary tenderness. Straight from the heart of one of our most thoughtful writers, this book is a revelation, offering both a celebration of the bond between a father and son and an insightful glimpse into the workings of our memories and the legacies we leave behind.” —Gay Talese, author of A Writer's Life“Jonathan Kozol accomplishes something remarkable in The Theft of Memory: He preserves the essence of his father in the one place disease cannot touch him—on paper. As his father, a brilliant, Harvard-trained neurologist, falls deeper and deeper into the darkness of dementia, Kozol illuminates his father’s past in jigsaw: through stories, research papers, patient histories, love letters, old stethoscopes—creating a soulful collage of a great man by his supremely gifted son.” —Susannah Cahalan, author of Brain on Fire“For a number of reasons, many of us avoid thinking about old age, fading health, and death. Kozol’s plainly and powerfully written book about his remarkable father is a notable and compassionate exception. It deserves to live on a small shelf with John Mortimer on Mortimer senior, Didion on Dunne, Bayley on Iris Murdoch, and Gawande on Gawande…A fine and often eloquent book about holding on while letting go.” —Lawrence Hartmann, M.D., Past President, American Psychiatric Association
About the Author JONATHAN KOZOL is the author of Death at an Early Age, Savage Inequalities, Amazing Grace, and other award-winning books about young children and their public schools.
Excerpt. © Reprinted by permission. All rights reserved. Chapter OneThe Onset of an IllnessMy 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 TwoThe Ends of DaysMy 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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18 of 18 people found the following review helpful. Heartrendingly honest but deeply encouraging By Trudie Barreras “The Theft of Memory” by Jonathan Kozol is a radical departure from his typical writing relating to the deficits in education policy and academic support of disadvantaged children in America’s ghettos. Rather, it is a deeply moving personal memoir about his experiences in dealing with his father’s prolonged struggle with Alzheimer’s Disease and eventual death, at the age of 102, in 2008.Jonathan’s father, Dr. Harry Kozol, was a renowned and pace-setting neuropsychiatrist, significant not only because of his writing and clinical expertise, but noted on the national scene for having been called to consult and give testimony at the sensational trials of Patty Hearst and the “Boston Strangler”. In the early 1990’s, however, Dr. Kozol began to experience the onset of his illness, and as a result of his own professional knowledge, was able to enlist his son’s cooperation in making realistic and practical arrangements for his eventual decline.Kozol’s memoir is meaningful at many levels. First, of course, it is a heartfelt and touching testimony of a son’s deep concern for his parents. Jonathan’s mother, Ruth, was not afflicted with Alzheimer’s, but she, too, lived to be over 100, and during her last years was physically feeble though mentally acute. Due to the relatively comfortable financial status of the elder Kozols at the time of the onset of Harry’s illness, it was possible to provide more than adequate care during the early years of the doctor’s decline, but even so the eventual financial stress became acute. The author is honest that this can be a major issue, especially for those of more modest resources.Jonathan Kozol is sharply critical of some of the professional medical attention his father received, while being strongly affirmative about the devoted efforts of the several attendants who were retained to give private care, both during Dr. Kozol’s sojourn in a residential nursing facility, and after the decision was eventually made to return him to home care. It is clear he considers the deficit in geriatric medical care as relevant to our national lack of concern, just as he has previously deplored the neglect of the educational needs of disadvantaged children.Finally, this book gives an insightful first-person description of both the challenges and the rewards of becoming reacquainted with one’s parents in their declining years. As it happens, I am approximately the same age as Jonathan Kozol, and had both my parents living in my home during their final years. Neither made it to the “century mark”, and neither had Alzheimer’s, but none-the-less I found myself deeply moved by his narrative and able to relate to many of his observations and conclusions. As a result, I can assert with confidence that this book should be extremely meaningful to anyone who is facing a similar experience in terms of dealing with aging of self or loved ones. It is heartrendingly honest, but also deeply encouraging.
12 of 14 people found the following review helpful. Mosaic Memories . . . . By SundayAtDusk Books on parents with Alzheimer's disease, like books on children with autism, are abundant these days. I usually don't read disease stories any longer, but decided to get this book since I'm familiar with Jonathan Kozol's writings. Also, the promise in the book's description of his father, Dr. Harry Kozol, narrating "step-by-step, his slow descent into dementia" was intriguing. Dr. Kozol does do a bit of that in the beginning of his illness, but it's very limited. Much of the book is actually about the care an Alzheimer's patient needs, how the need for such extensive and expensive care affects the family, as well as the need to find competent, compassionate health care workers to provide good care. In true Jonathan Kozol form, he points out how those who are seen as not having anything further to contribute to society, often don't receive the same high quality care as those who have a future of possible contributions.The rest of this book is a memoir where Mr. Kozol explores his relationship with his parents, and explores his father's life. This also is very limited, however, in the sense that it all seems like just the tip of the iceberg. There's an undercurrent of unspoken things in the story, and that made this book a bit of a frustrating, not totally satisfying read. But then family matters are private, and most of the time should be kept private. One wonders if those with Alzheimer's disease want their children to be telling the story of their descent into uselessness. Regardless, if they have no idea of what is going on or if they are dead, would they have wanted their children to describe in detail their illness to the public, including very personal matters? Moreover, Mr. Kozol's mother, who did not have Alzheimer's, told him a secret one day, after making him close the door to the room, so no one else would hear. That secret is in this book. Why? Whose business is it? If Jonathan Kozol wants to write a memoir about his life and family, he should write a memoir and put it all in context, not write a quasi-memoir like this one.
9 of 10 people found the following review helpful. The Connection By prisrob "Memory makes us. If we couldn't recall the who, what, where, and when of our everyday lives, we would never be able to manage. We mull over ideas in the present with our short-term (or working) memory, while we store past events and learned meanings in our long-term (episodic or semantic) memory. What's more, memory is malleable–and it tends to decay with age. "Psychology Today'The Theft Of Memory' is a fascinating story of Memory. It is told by author, Jonathan Kozol, in reflection of his parents, his father who was diagnosed with Alzheimer's, at age 88, but lived into his 100's, and his mother who had some dementia and lived until 102. Both of his parents were loving and important to him, but it was his father who left reams of papers and boxes of his professional life for Jonathan to go through. Like many children, it is not until our parents are older do we really obtain a sense of them. The times when we can ask questions and listen to stories more fully, and then put our memories to work. Memory is not singular, but memories come to us in fits and starts interwoven in between events. It was not until I read this book that I was able to completly comprehend my memories of events and people. This is not a scientific book, but a story of a family told through memories.Dr. Harry Kozol was a brilliant clinician, able to assimilate a diagnoses between neurological and psychiatric illness. He was trained at Harvard and John Hopkins, and settled in Boston. Dr. Kozol was well know and respected and was at times asked to care for well known people. Eugene O'Neill was one of those people, and they developed a deep bond. Dr. Kozol also helped Mrs. O'Neill. In his career, Dr. Kozol and his wife traveled the world, met interesting and important people. They had a daughter and a son, Jonathan.During Dr Kozol's journey with Alzheimer's, Jonathan spent many evenings with his parents at their home or a nursing home where his father spent a couple of years. They would discuss past events and Jonathan was able to go through his father's papers. Some of these papers were records of his patients, others were letters and written correspondence that gave Jonathan a more full picture of his father's and mother's lives, and memories would descend from previous times. Jonathan developed a more full and intimate relationship with both parents, but in particular with his father.Another aspect of this book is the financial impact a disease can take. Dr Kozol and his wife required around the clock care, and it ate up all of their savings. They had attentive and loving people caring for them. Jonathan was able to bring his father back home to live with his wife for their later years. This decreased the total financial burden, but near the end, their money was gone and Jonathan paid for their care.One other important facet of elder care is the importance of 'Living Wills' and 'Do Not Resuscitate' staus. Once you are part of the care giving team, and have a close, loving relationship with your parents, it is often difficult to let them go. It is important to know exactly what your loved ones want at the end of their life.After his parents died, Jonathan wrote this book with memories fresh in his mind, but put it away for a few years. Later, he discovered his memories had not changed and decided to publish the book. This combination of his father's, mother's and his own memories give us this profound book.Recommended. prisrob 04-20-15
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