In the morning when I return to my father’s side, there appears to be very little change in his condition. He tries to force food and water down his throat without success, and I continue to try to reason with him. We are both getting nowhere. Then suddenly my mother, who has been silently watching and senses our stalemate, gets up from her chair, walks slowly and painfully across the room, bends over my father and, looking straight into his face, implores, “I want you to go to the hospital. Do it for me. Do it now.” I am exasperated and embarrassed by this unabashed begging. But after all my carefully worded statements about choices and control, she speaks directly from the 40 n jonathan g. silin
heart. I check my irritation, knowing that this moment is as much, if not more, hers than mine. She is learning, in her eighty-seventh year, to make a demand for herself, to cash in on their sixty-year-old marriage ticket to purchase a few more weeks, months, perhaps years of life together. She has earned the right to speak and soon earns his reluctantly proffered words, “All right, I’ll go.”
I am more sad than relieved to hear his final consent. I feel that together, my mother and I have broken his will. I tell myself that, given his severely weakened condition, my father’s refusal to go to the hospital is neither rational nor reflective of his “true” desires. I tell myself that hydration and the gastronomy tube for direct feeding into the stomach do not constitute radical interventions, though they will prolong his life. Yet confidence that we are doing the right thing seems to slip from my grasp because I keep forgetting that my father is not in possession of his faculties and that we are no longer adolescent son and middle-aged parent fighting over a curfew hour. In concert with my mother, I have helped to orchestrate a Pyrrhic victory in a tortuous battle of wills rather than the kind of collaborative healthcare decision I had hoped would be possible.
In the hours to come I am consoled by the way my father becomes calm, relaxed, and patient. Perhaps he is relieved, but I don’t ask.
While he is lying on a gurney in the emergency room hallway, an orderly offers him a cup of water. For the first time in weeks he speaks the truth, “Thank you, but no. You see, I can’t swallow anything.” My father gives himself over to the care of others. There is no dissembling in the hospital. Throughout the following week there is never a moment of recrimination, never a note of anger in his voice. He shows more consistent good humor, even his long silenced sense of humor, than he has in the preceding two years.
Later that first night, reviewing the events of the day, my niece accuses my mother and me of having forced my father into the hospital against his will. I am stung by her words, primarily because they resonate with my own doubts. I have tried to imagine myself in his body at this time. I am not terribly successful, but the exercise tells me that m y fat h e r ’ s k e e p e r n 41
there is much that I don’t know, enough so that I don’t feel comfortable making an end-of-life decision for him.
Anne can’t understand why my father goes on, given the extreme limitations of his life, but, when pressed, she is reluctant to imagine an alternative scenario to the one that has taken place: my father collapsing in our unprepared midst. She confides that she and her boyfriend have decided on permanent DNR (do not resuscitate) tattoos so that there will be no mistaking their desires. And therein lies the nub of the problem: what are the desires of my father, eighty-seven, frail and frightened?
Over the preceding days I have tried to listen to his behavior as well as his words in my attempt to assess his intentions. While he was refusing to go to the hospital, he feverishly persisted in attempts to eat, drink, and swallow medications. He even said he would go into the hospital if his cancer surgeon, halfway around the world and un-reachable just then, ordered him to go. He did not want to accept responsibility for prolonging his own life. Once in the hospital, he is an active participant in his recovery, taking pride in the total hours he manages to sit in a chair, an important element in recovery from the pneumonia with which he will ultimately be diagnosed, and volun-tarily initiates small exercises geared to improve his circulation.
While I once thought my father would not want to suffer unduly or to live with severely diminished capacities, I am learning something different. As life narrows, it becomes that much more precious.
My niece has a very different perspective. Despite the periodic career anxieties and personal identity crises that I imagine may cause her to doubt the future, she does have a lifetime ahead of her. Ripping out a few tattered, barely legible pages at the end of the book of life may seem reasonable. Most of the preceding pages have not yet been written anyway, and it is impossible to imagine the subtleties of plot that will knit together the beginning and the end of the text. At fifty-four, having passed life’s midpoint, I have begun to experience some of the inevitable failings of the body that may foreshadow the final chapters.
I have learned to live with physical limitations that would have been 42 n jonathan g. silin
unacceptable a scant ten years ago. Besides, I have known too many people with HIV/AIDS to think that we can predict the future or that death always comes at the end of a full life.
My father wants to live at all costs. He also wants to live on his own terms. When the terms are no longer his to make—if they ever were—he feels caught in a vise of unacceptable choices. He wants the feeding tube, which he sees as a sign of further medicalization and loss of control, only if additional surgery on his throat fails. At the same time, he knows that he will not live to have the surgery unless he agrees to the feeding tube. He wants the tube and doesn’t want it.
He tells me that these opposing desires are not contradictory, and he is right. Paralyzed by what he sees as untenable choices, he forces me to decide for him. I give primacy to his overriding commitment to go forward and momentarily set aside the feelings of defeat elicited by the compromises that this entails.
In the end, the story of this hospitalization turned out not to be a dramatic one of choosing life or death but a far murkier tale about my father’s further loss of physical and mental control. The underlying subtext is my assumption of responsibility for deciphering his desires.
There will be no philosophically considered, carefully modulated, Kevorkian death for my father. He will want all the interventions and fight at every turn to have his way.
I am honored by my father’s trust and the intimacy that has grown between us. At the same time, I am angered by the new burdens he has placed on me and unnerved by his refusal to make critical decisions for himself. Perhaps my head is filled with too many film and television images of people in midlife who, when faced with a terminal illness, choose to die peacefully surrounded by family and friends.
Or reports from my own friends about elderly parents who, when faced with certain suffering and death, stopped eating and drinking.
Clearly some people in their final weeks or months are able to sort through their options, identify the quality-of-life limits they might tolerate, and orchestrate an ending that makes sense to them. My father, in contrast, seems to have turned a corner that makes such calm y fat h e r ’ s k e e p e r n 43
culations impossible. Perhaps, given his constitution, they would never have been possible.
One thing is certain, the time for existential conversations about contingency and possibility, choice and mortality, is long gone. The terms for these deliberations set out by Camus and Sartre, Malraux and Beauvoir—the bad faith manifested in denying possibility, succumbing to fixity, and believing that time will not run out—still ring in my own ears. But they were laid down in another era, by thinkers who were faced with other kinds of life-and-death decisions necessitated by political and social commitments. For his part, my father sees no acceptable choices, there is no future worth living for, and good faith is a luxury that younger men concern themselves with. At the same time, he can hardly be said to be giving up and clearly does not want to die. Propelled forward by anger and anxiety, he pursues the impossible, a life witho
ut hope in the future, a life in which minute-to-minute, day-to-day survival is all that really matters.
My own days are now framed by the essential moments of the human condition, our natality, how to conceive of and nurture the beginning of life, and our mortality, how to live alongside someone who is dying. To me, caring for the very young and the very old is best understood as an ethical responsibility, a societal good in itself that should be separated from any ideas about future rewards. In a democracy that celebrates autonomy, self-sufficiency, and the accumulation of capital for the future, it may be especially hard to focus on the moment-to-moment needs of the dependent. The rewards of care are less tangible and the challenges to our value system that much greater.
My niece finds it difficult to look directly at my father’s situation and shuts out the confusing emotions that it elicits. In a similar way, when scientists and educators define children as undeveloped, they collude in trying to keep at bay the sometimes threatening emotions that are buried inside us. Locating irrational, impulsive, and pleasure-seeking behaviors in children allows us to see ourselves as rational, in control, and altruistically motivated. I am afraid that too often, well 44 n jonathan g. silin
intentioned caregivers such as my parents turn children into a ser-viceable other, one that reinforces their own identities as adults and justifies their control of young people’s lives. Like my parents more than half a century ago, professionals today believe that children require constant watching to insure that they do not get out of hand and challenge adult ways of organizing the world. Assisted by all manner of new technologies, classrooms, afterschool programs, and summer camps are set up to keep children physically in view at all times while increasingly sophisticated psychological assessments and academic tests bring to light qualities once hidden from sight.
And perhaps, for Anne and myself, it is no different with the elderly. We are frightened by what we see. My father forces me to confront mortality, to feel old before my time. I try to keep some distance in word and deed. If I describe him as needy, failing, and deeply depressed, then surely I am self-sufficient, thriving, and optimistic. If I declare him irrational and out of control, then surely I am reasonable and in charge. How can I possibly know what it would be like to live with all my senses askew and basic biologic functions mediated by mechanical devices or the assistance of others? How can I know what it means to have little regard for past accomplishments and future projects? Like children, the elderly force us to reorder our priorities, to step back from our concerns for tomorrow, and attend more closely to this day.
I was in graduate school when I first began to develop my criticisms of child development theory. Skeptical of the way it functions to distance teachers from their students, I wanted to explore the common ground adults share with children, the existential themes and ways of knowing that bind us together in one world. Other early childhood specialists were curious when I asked them to consider what is gained and what is lost when adults define children as “undeveloped,” in need of just the right amount and kind of protective nurture to mature properly. Ultimately, however, my peers in the field were unable to give up the security of the child development canon. When I comm y fat h e r ’ s k e e p e r n 45
pleted my doctoral work, I was often a finalist, but did not receive the job offer I sought—a tenure-track professorship.
Then my words were couched in philosophical and political language. Now there is a much larger body of empirical evidence to substantiate my criticisms of developmentalism and educational practices that continually direct us toward the child’s future. Now too I have a heightened sensitivity to time gone by and of the options no longer available to my parents or to me. At first, I did not realize how threatened I felt by their despair, their lack of hope. But over time, I have come to understand the central place of hope in our arsenal of survival strategies. In hope we defend against the past; the future will be better. In hope we implicitly acknowledge our disappointments; something wasn’t right back then. Hope allows us to imagine a state of affairs in which the past is ameliorated and our deepest losses are compensated.
Theories and practices focusing exclusively on what children will become rather than what they are, however, reflect a kind of blind hope. Blind, that is, because it defends against remembering the ravages of personal and social histories. I think of myself as an advocate for a more modulated form of hope built on a willingness to look at the present and back at the past without allowing ourselves to be overcome by what we see.
Adults are hopeful because of the children. Children in turn contain this precious investment made by their elders. When time and illness destroyed my parents’ defenses and left them quite naked, they took little interest in my potential or my accomplishments. It was not my desire for their approval, although there is always that, but the withdrawal of their investment that signaled our changed relationship and triggered my deepest anxieties. Despite their many weaknesses, my parents were still powerful in ways that I am sure they didn’t imagine. I was angry about their ability to deprive me of the status they conferred at my birth, emblem of hope. At the same time I accepted their new self-absorption; after all, they were finally leaving the future to me.
4
Psychic Reality
[A] life as led is inseparable from a life as told—
or more bluntly, a life is not “how it was” but how it is interpreted and reinterpreted, told and retold: Freud’s psychic reality. . . . So perhaps a metaphysical change is required to alter the narratives that we have settled upon as “being” our lives.
j e r o m e b ru n e r , “Life as Narrative”
Growing up, each of us builds an understanding of who our parents are and how our family functions. We construct an overarching narrative of our life and tell particular stories that capture the complex interpersonal dynamics that thread their way through our days. We tell these stories over and over again because they enable us to make sense of our experience and lend credence to the larger narrative. We come to believe in their reality. Over time these stories, our memories of the past, become fixed, and reinterpretation less likely.
Although my work is bound up with children and the role of autobiography in teacher education, my own childhood stories remained as immutable as anyone else’s. For me, however, when the overarching narrative finally became unsettled, it was not by a “meta-47
48 n jonathan g. silin
physical” change but by my parents’ all too physical decline and the frequent bedside scenes that followed.
The first time my mother lies in the critical care unit of a local hospital, in the spring of 1996, with her long hair unpinned, released from the tight French roll in which it is usually bound, I am stunned to see glimmers of youthful openness in her face. The medical crisis has caught her off guard, and she reveals an emotional accessibility that had disappeared many years ago. It is as if the surgeon’s knife has not only cut out the bleeding ulcer but also punctured an invisible wall surrounding her inner self. Here once again is the conscientious young parent capable of genuine empathy and pleasure in the achievements of her child. At the same time as I am thankful for this opportunity to think of my mother as the loving caregiver, I see with greater clarity the person she has become—fearful, anxious, and suspicious of others.
My mother had once projected competence and confidence. A social worker and businesswoman, she had lived through two successful careers. At home, continually challenging my extreme shyness, she encouraged me to be more adventurous—to climb to the top of the jungle gym unaided, attend a second-grade classmate’s birthday party, or risk the terrors of sleepaway camp. Whatever fears and insecurities my mother may have had at that time were kept in check by a stronger sense of parental responsibility.
In contrast, my father, while a loving and engaged parent, was subject to severe depression. I did not see him as possessing particular social skills or emotional resilience. In 1997, a year after my mother’s ho
spitalization, just after the first of his surgeries for cancer of the larynx, sitting at his hospital bedside late in the afternoon, I understand something quite different. As he recovers from throat surgery and is still unable to use his newly reconstructed voice box, an unfamiliar nurse is attaching a clear plastic bag of life-sustaining fluids to an IV
pole. My father taps the nurse on the shoulder to gain his attention, picks up a yellow pad, and writes a brief note in his cryptic handwriting. The nurse, who has temporarily stopped his work, breaks into a m y fat h e r ’ s k e e p e r n 49
broad smile as he deciphers the words, looks directly at my father, and says “Benjamin,” his own name. My father smiles back, and Benjamin returns to the task at hand. I am in awe of this simple interchange. My father is able to generate a life-sustaining fluid of another kind.
As a child, I knew my father to be a demanding, exacting, often exasperating person. Now I also know my father as a person who easily forms relationships. He treats the hospital staff with respect, as individuals. They respond in kind. My father is able to make his way in a large and frightening institution while ensuring some control over the course of his treatment. He skillfully collaborates in his own care when dealing with professionals of one stripe or another.
Although events change people, they also bring out aspects of character that have always existed. The past has become unfastened from its secure moorings in my memory. I wonder if my mother was as confident as she once appeared, as my memory has captured her. Was my seemingly intractable shyness an inherent character trait or the reflection of a complex maternal relationship? I understand that beneath the surface of her always encouraging words, my mother may have communicated deep ambiguity about separation and the risks of independence. Perhaps too my father was far more socially accomplished than I had realized, and my older brother far less able to deal with the “real” world than I had grasped.
My Father's Keeper: The Story of a Gay Son and His Aging Parents Page 6