Journal of Religion and Health, Vol. 30, No. 2, Summer 1991
A Spirituality for the Long Haul: Response to Chronic Illness M A U R E E N H. MULDOON and J. NORMAN KING A B S T R A C T : This article outlines a spirituality appropriate for those whose lives are affected by chronic injury or illness. Spirituality may be defined simply as a sustained and lived-out vision of life. An emerging spirituality of the whole person in relation to self, others, society, the earth, and a divine presence that pervades all that is acknowledges: (1) the basic dignity of the person, and (2) the drive to growth, wholeness, and fullness in every person. It implies a respectful assistance toward whatever human growth is possible for the chronically ill, while summoning a caring presence that remains faithful despite limitations or impending death.
Many people in our society are afflicted by chronic illness. This reality challenges us, both as individuals and as a society, to respond appropriately to this form of h u m a n suffering. For both authors, the issue has been one of strong personal concern as well as professional interest. One of us grew up with a younger brother born with permanent heart damage. The other cared for her grandmother after a debilitating stroke and worked during summers and holidays in a chronic care hospital. This exposure to people afflicted with chronic disease and disability evoked many questions about the meaning of life, the nature of suffering, and the responsibility of society to those who are weak and vulnerable. In the present article we wish to explore some of these issues. We shall begin by raising some fundamental questions about our response to people suffering from prolonged illness, debilitating disease, or permanent physical injury. We shall then look briefly at the notion of spirituality itself and its contemporary direction. Finally, we shall attempt to relate this spirituality directly to the chronic care situation.
Maureen H. Muldoon, Ph.D., is Assistant Professor in the Department of Religious Studies at the University of Windsor in Windsor, Ontario. J. Norman King, Ph.D., is Professor in the Department of Religious Studies at the University of Windsor in Windsor, Ontario. 99
9 1991 Institutes of Religionand Health
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Preliminary remarks and basic questions Despite medical advances, the need for long-term care remains. We are an increasingly aging population and live in a society where m a n y diseases are as yet incurable and damage from accidents remains irreparable. The stark reality of so m a n y people beset by ongoing limitations and suffering confronts us with very basic questions. These we m a y first note and then explore. How can we respond creatively to people who are suffering from ongoing illness or injury, and who will never return to a "normal" model of health? What ideas, attitudes, and values do we find in our society and culture t h a t help or hinder us in this task? How can we look at this illness or injury in a way t h a t helps to make some sense of it? How can we act in a way t h a t is helpful for those afflicted, for their families, and for ourselves--if we are care-givers--in these situations? Where do we find the strength and support and challenge to do so? In effect, where can we find the resources to understand honestly, to act appropriately, and to sustain us in the face of long-term physical and/or emotional injury and illness? Behind these very concrete and demanding questions are some underlying issues. Is it possible to be a whole person in a broken body? Is growth possible in the face of debilitating illness or injury? Can a n y t h i n g be done when a person's spirit and hope are shattered by his or her condition? Is there a value to life, a sanctity of life, in spite of pain and suffering and a thousand limitations? How are we to look at our own limitations, wounds, brokenness, and mortality as care-givers? How do we deal with the anger and fear and longing t h a t are bound up with the h u m a n condition? What is the n a t u r e of the h u m a n self t h a t longs for wholeness, yet often must endure so much brokenness? What, if anything, lies behind this whole process, sometimes of joy and often of sorrow, t h a t we call life? In short, how can we discover and live a meaning of life t h a t takes into account its positive as well as negative factors? How can we work out a sense of worth and purpose to life t h a t addresses the issues presented to those whose lives are affected by chronic illness, whether as those personally afflicted, their families and friends, or professional care-givers? In raising these questions, we are in fact, without using the term itself, looking for a "spirituality" and, more precisely, a spirituality for those affected by chronic illness. To this topic we now turn, beginning with some overall observations on the nature and forms of spirituality.
What is spirituality? Spirituality m a y be defined simply as a sustained and lived-out vision of life. 1 In its most basic meaning, a person's spirituality is the way t h a t person leads
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his or her life. In this sense, every h u m a n being has a spirituality. The direction given to one's life, the story one tells with one's life, is itself rooted in and embodies a certain way of looking at life. 2 This vision of life m a y remain inarticulate, especially if the individual merely adopts the conventional worldview of the dominant culture. Or it m a y become explicitly conscious, perhaps as a result of exposure to an alternative perspective or struggle with adversity. In either case, this lived-out vision of life relies on certain individual or group activities and practices in order to be sustained and expressed. These may be forms of reflection, prayer, conversation, ritual, social involvement, or even the assimilation of attitudes fostered by the mass media. As the term itself suggests, spirituality can also be described as the spirit t h a t animates a person's life, the underlying current t h a t runs through one's whole life. In this sense, our spirituality is the inner force t h a t fuels the way we think and act and live. "Spirit" derives from the Latin world spiritus which, like its Greek and Hebrew counterparts, means at once breath, wind, and spirit. 3 This association comes most obviously from the observation t h a t if we are alive, we are breathing, we have the breath of life in us, and if we cease breathing, we die. In this sense, breath is what makes us alive. But we m a y also live and breathe by fear or hope, greed or compassion. Any such qualities, singly or in combination, can be the spirit t h a t shapes our lives. Spirituality, then, refers to the spirit within us by which we live; it is what lies behind the way we see and live and sustain our lives. In the face of chronic illness, we can ask: What spirit will be meaningful to those who are suffering and help care-givers to respond appropriately? Eric Cassel describes suffering as "the state of severe distress associated with events t h a t t h r e a t e n the intactness of the person. TM Thus, any situation t h a t causes suffering will affect a person's spirituality. Such an event will challenge a person's present vision of life and summon his or her resources to respond to this t h r e a t to integrity. In recent years there has been something of a paradigm shift in ways of looking at the inner forces t h a t animate our lives. Previously common views have tended to regard spirituality as something purely "spiritual" in contrast to the physical, a concern of the soul rather t h a n the body. This approach likewise saw spirituality as something interior and private, rather t h a n relational and social, extending into the world around us. It also portrayed God chiefly as an intervening outsider, extrinsic to life and experience, whom we encountered and addressed in narrowly defined religious activities. 5 Current studies stress a more holistic, socially conscious, and even environmentally sound spirituality t h a t calls into question rigid dichotomies of soul and body, self and world, and affirms the connectedness of all t h a t is in a dynamically unfolding cosmos. Moreover, images and concepts of God are currently articulated not as a remote intrusive agent, but as a transcendent presence at the h e a r t of life, the underlying source and ground of all t h a t is, its basic t h r u s t or indwelling spirit. 6 There is thus an emerging spirituality of
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the whole person, and of the person in relation to self, others, society, the earth, and a divine presence that pervades (rather than invades) all that is. In addition, the earlier spirituality and culture, which reflected a strict division and separation of body and soul, self and other, h u m a n and divine, tended to think of relationships as extrinsic and in images of domination, such as master-servant, ruler-subject, officer-soldier, and the like. Soul must rule over body, mind over matter. In our relationships with others, we must either command or obey. The realm of nature is to be conquered and its forces harnessed to h u m a n desires. This view has also found expression in the restriction of medical care to concern for the body and its pain, sometimes to the neglect of the whole person and his or her suffering. 7 The newer spirituality, which has ancient if uncovered roots, and has emerged in many current expressions of feminist spirituality, tends to speak of integration rather than domination, cooperation rather than control, empowerment rather than power over. 8 In this regard, it is already in much greater harmony with the chronic care rather than the acute care model for understanding and responding to illness, recently proposed by Jennings, Callahan, and Caplan. 9 The acute care model of illness, which is prevalent in health care delivery, is best characterized by the "autonomy paradigm." Disease is defined as an enemy, an alien threat to the self. The goal of medicine is to launch an attack on this enemy, which m a y be identified as an invading organism, the disease process, or, perhaps, a biochemical malfunction. In conquering the disease, the person is cured and returned to health. The "contractual model" of medical care is suited to this acute care paradigm. The patient, who is a rational, self-interested subject, enters into an agreement with the physician in order to combat the illness. In this individualistic understanding of the person, autonomy and self-identity are viewed as existing prior to and independently of the experience of illness. The chronic care model differs in recognizing chronic illness as a component of the person's overall state of being. The challenge for those with chronic illness is to try to integrate their illness constructively into their daily lives and sense of self-identity. Coming to terms with chronic illness demands diplomacy and a process of negotiation. It is necessary to sustain meaning in life lived with and in spite of illness. The individualistic conception of autonomy, which is operative in the acute care model, is inadequate for chronic care. In the chronic care paradigm, autonomy is something that the physician helps the patient to achieve. It is not held abstractly, as an a priori property of persons, b u t is "the achievement of selves who are socially embedded and physically embodied. ''1~ Hence, emerging trends both in spirituality and in chronic care raise the question of how to realize a meaningful life as a total person in a social context, even in the face of chronic illness. In the next section, we shall attempt to articulate the beginnings of a response to this question.
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Applications to chronic care
In the light of the newer spirituality we have described, there are certain basic principles t h a t are foundational for the attitude to and response to the person afflicted with chronic injury or illness. The most fundamental principle is the basic dignity and worth of the person who is afflicted and in one's care. This can be extremely difficult to recognize and maintain, especially with people who are physically handicapped, hostile in attitude, inaccessibly withdrawn, or bereft of hope. Yet beneath any or all of these layers dwells a fellow h u m a n being to be treated with respect. A second basic principle concerns recognition of the drive to growth, to wholeness, to fullness in every h u m a n person. Yet those in chronic care seem in so m a n y ways to have been thwarted in this drive, to such an extent t h a t their physical condition and its impact upon their whole being seem to contradict this vital h u m a n need and longing. Indeed, it readily conveys to those afflicted a sense t h a t they are of no worth because they are "stuck" in their situation. In fact, the very pain of limitations t h a t seem to prevent growth to wholeness, and the agony of feeling t h a t one is worthless, are indications of how deeply rooted is the h u m a n yearning for worth and wholeness. This suffering also reflects the t h r e a t to worth and growth experienced in the face of prolonged illness, progressively debilitating disease, or permanent physical damage. Now if there were no basic worth, there would be no difficulty. The person could simply be discarded as an outworn object of no further use. And if there were no drive to fullness, nor other basic needs, the person could also simply be provided with physical needs and left as he or she is. Yet if the person is of intrinsic worth and longs for a fullness of life, then a response to t h a t worth and longing is called for. Moreover~ since the person afflicted is in a situation t h a t seems to limit one's very personhood, then an appropriate response will have to take into account this contradiction. Such a response cannot contain any elements of condescension or pity. Such attitudes are a negation of worth, since they presume t h a t the object of one's attention is an inferior being. To act from these attitudes is simply to demean and in some way reject the basic h u m a n n e s s of the other. It can readily provoke hurt, frustration, anger, and sadness. At the same time, we cannot presume to understand the suffering of another, especially if it is more intense t h a n a n y t h i n g t h a t we ourselves have known. We can r a t h e r respect the sorrow of another, as part of the mystery of t h a t person. And we can give it space in the silence of our attention. However, while recognizing the drive to fullness of life and therefore the drive to growth in this direction, we are also quite well aware of situations in which there is little or no awareness, or awareness is confused, and a person
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lingers on who will die in a matter of days, weeks, or months. As of this writing, a close friend has been visiting his mother, and feeding her virtually every day for several months. She is paralyzed on one side from a stroke, is now in her eighties, has some mental confusion, and apparently no shortterm memory, although older memories remain. He feels that her death would be welcome at this stage. He remarks that while little is apparently accomplished, he considers it important to visit her regularly. He is struck, too, by the number of elderly and chronically and terminally ill people who are simply abandoned. He adds that what he calls this ongoing encounter with death helps him see through the surface game-playing that goes on in m a n y areas of life and gives him a clearer sense of his own priorities. Perhaps we can, with infinite cautiousness, make a distinction in chronic care between those who are capable of some personal growth to wholeness despite or through their affliction and those in a sense whose lives are apparently over, completed to whatever extent possible, and who remain alive in a confused, incompetent, or permanently vegetative state. In the first case, the appropriate attitude is one of fundamental respect for the person and respectful assistance toward whatever h u m a n growth is possible. In the second instance, provided we do not sell short the potentialities that are there, the basic response is one of treating the person with a basic respect as a fellow h u m a n being. Let us examine these a little more closely, beginning with assistance toward growth despite enduring afflictions. One aspect that is over-stressed in our society is physical appearance. Yet basic hygiene, cleanliness, neat appearance, and discreet grooming can be expressions of self-esteem, and can help maintain it in a debilitating situation. Unobtrusive assistance in this regard can be helpful, whether in gently encouraging people to keep up their physical appearance or in helping to supplement their own ability in this regard. A few years ago a woman crippled from birth and further disfigured from burns, who has struggled to become a practicing psychologist, summed up her situation in these words: "I am not what you see. ''11 She was affirming an inner wholeness t h a t did not seem to her to be reflected in her physical appearance or in the response that this appearance tended to generate in people. Hence, we can assert the importance both of assisting in the attention to physical appearance, and at the same time insisting on seeing behind the outer form to the person who might look quite different to him- or herself and to others on the inside. Since spirituality is so intimately related to our embodied selves, it is also important to recognize that the person, irrespective of the debilitating effect of chronic illness, remains a sexual being. Acknowledging this fact and creating the conditions that allow men and women, if they so choose, to maintain some form of sexual intimacy in their lives, either within an institution or at home, is basic to their sense of self.
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Physical pain and discomfort can also make our development as h u m a n persons more difficult. It can be a great hindrance to full awareness and thought, to reasonable decisions, to creative activity, to conversation, to outside interests. This is especially true where pain is severe or ongoing. As a result, any efforts to diminish physical pain and to promote maximum physical comfort are desirable. In this way, the abilities of the person to think, feel, decide, relate, and grow as a person despite the physical situation are lostered. A further factor in prolonged and incapacitating illness or injury is the diminishing of activity, the lack of productive work and involvement in the outside world. The loss of one's life's work or the seeming incapacity to have any life's work, the inability to participate directly in the political process, the sheer lack of mobility that prevents one from readily getting around and doing t h i n g s - - t h e s e are all felt as a diminishment of one's intactness as a person. They can provoke a feeling of helplessness and uselessness, and can shrink the horizons of one's awareness, interest, and influence. Here it can be essential to assist people to be as active as possible and to maintain and develop as many interests as they can (where this is feasible). One example is the English scientist Stephen Hawking, who speaks through typing into a computer linked to a voice synthesizer. 12 There are countless others who have made major contributions with their lives, in spite of a chronic illness. Growth is possible in the face of damage by redirecting and channeling one's energy and re-visioning one's life. To do so, in effect, is to get in touch, in a conscious way, with one's spirituality, and to develop and adapt it to one's situation. And yet, of course, in many cases, there seem to be very limited possibilities and the unlikelihood of much growth. An additional factor closely related to the above is the isolation that often comes with chronic illness. One's sphere of existence seems to be confined to the small world of the hospital or chronic care unit. Where a person has enjoyed good health prior to disease or accident, or even where this has never been the case, the ready contact with all kinds of people, and in m a n y instances the continual contact with family and friends is taken away. The person encounters only people doing a job "to" and "for" oneself rather than "with" oneself. The visits of family and friends and acquaintances may become tess frequent as the situation continues on and on. In any case, there is the problem of isolation. This experience of being cut off from others is an enduring form of suffering. Our sense of identity is very much bound up with our relationships to others. Our sense of worth is very much tied initially to how others treat us. The earliest image we form of ourselves is to a large extent a reflection of our parents' image of us. We discover and develop who we are in dialogue, conflict, activity, with others. The invitation, challenge, and even provocation to extend ourselves, to move in certain directions, come considerably from others. It is also in the face of others that we express and stretch the full range of our thoughts and feelings and convictions. Perhaps nowhere more
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than in friendship do we discover and express at once our own deepest self and all its dimensions while being opened to the full self of another. A spirituality of h u m a n worth and growth, therefore, would find expression in encouraging and facilitating as full and rich contact as possible between residents and family, friends, volunteers, and staff, and even pets. The difficulty of sustaining this process requires that we have ongoing means of support that give us the insight and strength to respond in extremely difficult situations. A very delicate matter, one that requires a perceptive judgment on the part of persons involved with chronically ill h u m a n beings, is the issue of what might be called a respectful challenge to people. As is the case with our own children and friends, we sometimes need to demand from people what they are capable of being, to call them to move beyond their present level or impasse. Certainly, we may merely put up with people (ourselves as well as others) where they now are, where they are presently stuck, even when they are actually capable of moving further physically, mentally, emotionally, or in other ways. To do so, however, is not an invitation to life, but a confirmation of death. At the same time, to discern when to challenge and demand from another, and when to let another be requires a very acute sensitivity to the person. Perhaps it also requires that we speak from experience. Inevitably the question of death will arise for the person afflicted with chronic illness, either because of the proximity of death or because of the ongoing experience of loss and limitation. An authentic response requires the care-giver to face his or her own death. In this situation the emerging spirituality that focuses upon growth, empowerment, integration, and connectedness offers the most potential for a good death. It is by living one's life fully that a person can be most accepting of death. 13To the extent that a person is able to grow, to become most fully what one is able to become, and to share that process in friendship, compassion, and social responsibility, a person has a sense of wholeness and completion to life. Depending upon one's religious perspective, this completion of life will take on different meanings for different people. Within the Christian tradition, for example, this response might mean being united with God. Another sense of completion might lie in the conviction that one's very identity is not that of a private isolated entity but connected in some w a y with all that is. A person does not then see his or her leavetaking as a total departure or utter annihilation. In this vein, Monika Hellwig cites the view that if the dying dimension of life is the self-gift to others, then death might be regarded as a "transition of consciousness from being rooted in the individual body to being rooted in the community. ''14 At this stage the more practical aspects of care might include responses very similar to those described above; for instance, enabling the person to continue to direct his or her own life, fostering contact rather than isolation, managing pain. More specifically, the care-giver might assist the person in
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settling his or her affairs. It may also be necessary to help the person arrange for a substitute decision maker and/or advance directives in order to extend the person's autonomy into incompetency. For dying persons who are no longer competent, comfort care should always be given. If there are advance directives, they should be respected. There are many times, even aside from impending death, when it seems that nothing can be done, when the patient's difficulties appear overwhelming and the care-givers are wearied from responding to unrelenting demands that produce no apparently tangible result. Such occasions raise deeper issues about our presence to others that remain to be addressed. These essentially concern our openness and response to the suffering of other human beings. Henri Nouwen eloquently distinguishes between "doing" and "being." There are times when nothing can be done. However, we can remain present and faithful to one another. And this faithful presence has its own intrinsic value. The people in our lives who are the most m e a n i n g f u l . . . [are] not the ones who offer all sorts of advice, suggestions, or recommendations. The real friend, the real comforter, the real c o n s o l e r . . . [is] not the person with the solution, b u t the person who sticks it out with you even when there is no solution . . . . One of the most i m p o r t a n t h e a l i n g i n s t r u m e n t s is our ability to be present to each other. 15
References 1. Haight, R., An Alternative Vision, An Interpretation of Liberation Theology. New York, Paulist Press, 1985, pp. 239-246. For a basic presentation of contemporary spirituality, see Fox, M., Original Blessing: A Primer in Creation-Centered Spirituality. Santa Fe, N.M., Bear and Company, 1983. 2. See, for example, Hauerwas, S., Vision and Virtue. Notre Dame, Ind., Fides/Claretian, 1974; and Lebacqz, K., Professional Ethics, Power and Paradox. Nashville, Abingdon, 1985. 3. McKenzie, J. L., Dictionary of the Bible. New York, Macmillan Publishing, 1977, pp. 840-845. 4. Cassel, E., "The Nature of Suffering and the Goals of Medicine," New England J. Medicine, 1982, 306, 640. 5. For a brief analysis of the extrinsic image of God and religion, see Baum, G., Religion and Alienation. New York, Paulist Press, 1975, pp. 7-20. 6. Fox, op. cit., pp. 66-80, 88-92. For a recent theology of God, see McFague, S, Models of God. Philadelphia, Fortress Press, 1987. 7. Cassel, op. cir., 640. 8. For feminist influences on the new spirituality, see, for example, Ruether, R. R., Women Church, Theology and Practice of Feminist Liturgical Communities. San Francisco, Harper & Row, 1985; and Conn, J. W., ed., Women's Spirituality: Resources for Christian Development. New York, Paulist Press, 1986. 9. Jennings, B.; Callahan, D.; and Caplan, A., "Ethical Challenges to Chronic Illness," Hastings Center Report, Special Supplement, February/March, 1988, 1-16. 10. Ibid., 12. 11. These words are taken from an award-winning television interview on the CBC television program, Man Alive. For an account of the interview, see Bonisteel, R., In Search of Man Alive. Toronto, Collins, 1980, pp. 77-89. 12. Fox, C., "Stephen Hawking: A Man For All Time," PC~Computing, August 1988, 1,138-148.
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13. See, for example, Kfibler-Ross, E., Death, The Final Stage of Growth. Englewood Cliffs, N.J., Prentice-Hall, 1975. 14. Hellwig, M., What Are They Saying About Death and Christian Hope? New York, Paulist Press, 1978, p. 27. 15. Nouwen, H., "Reflections on Compassion," Catholic Health Association of Canada Review, July/August 1980, 8, 5, 8.
A Spirituality for the Long Haul: Response to Chronic Illness M A U R E E N H. MULDOON and J. NORMAN KING A B S T R A C T : This article outlines a spirituality appropriate for those whose lives are affected by chronic injury or illness. Spirituality may be defined simply as a sustained and lived-out vision of life. An emerging spirituality of the whole person in relation to self, others, society, the earth, and a divine presence that pervades all that is acknowledges: (1) the basic dignity of the person, and (2) the drive to growth, wholeness, and fullness in every person. It implies a respectful assistance toward whatever human growth is possible for the chronically ill, while summoning a caring presence that remains faithful despite limitations or impending death.
Many people in our society are afflicted by chronic illness. This reality challenges us, both as individuals and as a society, to respond appropriately to this form of h u m a n suffering. For both authors, the issue has been one of strong personal concern as well as professional interest. One of us grew up with a younger brother born with permanent heart damage. The other cared for her grandmother after a debilitating stroke and worked during summers and holidays in a chronic care hospital. This exposure to people afflicted with chronic disease and disability evoked many questions about the meaning of life, the nature of suffering, and the responsibility of society to those who are weak and vulnerable. In the present article we wish to explore some of these issues. We shall begin by raising some fundamental questions about our response to people suffering from prolonged illness, debilitating disease, or permanent physical injury. We shall then look briefly at the notion of spirituality itself and its contemporary direction. Finally, we shall attempt to relate this spirituality directly to the chronic care situation.
Maureen H. Muldoon, Ph.D., is Assistant Professor in the Department of Religious Studies at the University of Windsor in Windsor, Ontario. J. Norman King, Ph.D., is Professor in the Department of Religious Studies at the University of Windsor in Windsor, Ontario. 99
9 1991 Institutes of Religionand Health
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Preliminary remarks and basic questions Despite medical advances, the need for long-term care remains. We are an increasingly aging population and live in a society where m a n y diseases are as yet incurable and damage from accidents remains irreparable. The stark reality of so m a n y people beset by ongoing limitations and suffering confronts us with very basic questions. These we m a y first note and then explore. How can we respond creatively to people who are suffering from ongoing illness or injury, and who will never return to a "normal" model of health? What ideas, attitudes, and values do we find in our society and culture t h a t help or hinder us in this task? How can we look at this illness or injury in a way t h a t helps to make some sense of it? How can we act in a way t h a t is helpful for those afflicted, for their families, and for ourselves--if we are care-givers--in these situations? Where do we find the strength and support and challenge to do so? In effect, where can we find the resources to understand honestly, to act appropriately, and to sustain us in the face of long-term physical and/or emotional injury and illness? Behind these very concrete and demanding questions are some underlying issues. Is it possible to be a whole person in a broken body? Is growth possible in the face of debilitating illness or injury? Can a n y t h i n g be done when a person's spirit and hope are shattered by his or her condition? Is there a value to life, a sanctity of life, in spite of pain and suffering and a thousand limitations? How are we to look at our own limitations, wounds, brokenness, and mortality as care-givers? How do we deal with the anger and fear and longing t h a t are bound up with the h u m a n condition? What is the n a t u r e of the h u m a n self t h a t longs for wholeness, yet often must endure so much brokenness? What, if anything, lies behind this whole process, sometimes of joy and often of sorrow, t h a t we call life? In short, how can we discover and live a meaning of life t h a t takes into account its positive as well as negative factors? How can we work out a sense of worth and purpose to life t h a t addresses the issues presented to those whose lives are affected by chronic illness, whether as those personally afflicted, their families and friends, or professional care-givers? In raising these questions, we are in fact, without using the term itself, looking for a "spirituality" and, more precisely, a spirituality for those affected by chronic illness. To this topic we now turn, beginning with some overall observations on the nature and forms of spirituality.
What is spirituality? Spirituality m a y be defined simply as a sustained and lived-out vision of life. 1 In its most basic meaning, a person's spirituality is the way t h a t person leads
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his or her life. In this sense, every h u m a n being has a spirituality. The direction given to one's life, the story one tells with one's life, is itself rooted in and embodies a certain way of looking at life. 2 This vision of life m a y remain inarticulate, especially if the individual merely adopts the conventional worldview of the dominant culture. Or it m a y become explicitly conscious, perhaps as a result of exposure to an alternative perspective or struggle with adversity. In either case, this lived-out vision of life relies on certain individual or group activities and practices in order to be sustained and expressed. These may be forms of reflection, prayer, conversation, ritual, social involvement, or even the assimilation of attitudes fostered by the mass media. As the term itself suggests, spirituality can also be described as the spirit t h a t animates a person's life, the underlying current t h a t runs through one's whole life. In this sense, our spirituality is the inner force t h a t fuels the way we think and act and live. "Spirit" derives from the Latin world spiritus which, like its Greek and Hebrew counterparts, means at once breath, wind, and spirit. 3 This association comes most obviously from the observation t h a t if we are alive, we are breathing, we have the breath of life in us, and if we cease breathing, we die. In this sense, breath is what makes us alive. But we m a y also live and breathe by fear or hope, greed or compassion. Any such qualities, singly or in combination, can be the spirit t h a t shapes our lives. Spirituality, then, refers to the spirit within us by which we live; it is what lies behind the way we see and live and sustain our lives. In the face of chronic illness, we can ask: What spirit will be meaningful to those who are suffering and help care-givers to respond appropriately? Eric Cassel describes suffering as "the state of severe distress associated with events t h a t t h r e a t e n the intactness of the person. TM Thus, any situation t h a t causes suffering will affect a person's spirituality. Such an event will challenge a person's present vision of life and summon his or her resources to respond to this t h r e a t to integrity. In recent years there has been something of a paradigm shift in ways of looking at the inner forces t h a t animate our lives. Previously common views have tended to regard spirituality as something purely "spiritual" in contrast to the physical, a concern of the soul rather t h a n the body. This approach likewise saw spirituality as something interior and private, rather t h a n relational and social, extending into the world around us. It also portrayed God chiefly as an intervening outsider, extrinsic to life and experience, whom we encountered and addressed in narrowly defined religious activities. 5 Current studies stress a more holistic, socially conscious, and even environmentally sound spirituality t h a t calls into question rigid dichotomies of soul and body, self and world, and affirms the connectedness of all t h a t is in a dynamically unfolding cosmos. Moreover, images and concepts of God are currently articulated not as a remote intrusive agent, but as a transcendent presence at the h e a r t of life, the underlying source and ground of all t h a t is, its basic t h r u s t or indwelling spirit. 6 There is thus an emerging spirituality of
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the whole person, and of the person in relation to self, others, society, the earth, and a divine presence that pervades (rather than invades) all that is. In addition, the earlier spirituality and culture, which reflected a strict division and separation of body and soul, self and other, h u m a n and divine, tended to think of relationships as extrinsic and in images of domination, such as master-servant, ruler-subject, officer-soldier, and the like. Soul must rule over body, mind over matter. In our relationships with others, we must either command or obey. The realm of nature is to be conquered and its forces harnessed to h u m a n desires. This view has also found expression in the restriction of medical care to concern for the body and its pain, sometimes to the neglect of the whole person and his or her suffering. 7 The newer spirituality, which has ancient if uncovered roots, and has emerged in many current expressions of feminist spirituality, tends to speak of integration rather than domination, cooperation rather than control, empowerment rather than power over. 8 In this regard, it is already in much greater harmony with the chronic care rather than the acute care model for understanding and responding to illness, recently proposed by Jennings, Callahan, and Caplan. 9 The acute care model of illness, which is prevalent in health care delivery, is best characterized by the "autonomy paradigm." Disease is defined as an enemy, an alien threat to the self. The goal of medicine is to launch an attack on this enemy, which m a y be identified as an invading organism, the disease process, or, perhaps, a biochemical malfunction. In conquering the disease, the person is cured and returned to health. The "contractual model" of medical care is suited to this acute care paradigm. The patient, who is a rational, self-interested subject, enters into an agreement with the physician in order to combat the illness. In this individualistic understanding of the person, autonomy and self-identity are viewed as existing prior to and independently of the experience of illness. The chronic care model differs in recognizing chronic illness as a component of the person's overall state of being. The challenge for those with chronic illness is to try to integrate their illness constructively into their daily lives and sense of self-identity. Coming to terms with chronic illness demands diplomacy and a process of negotiation. It is necessary to sustain meaning in life lived with and in spite of illness. The individualistic conception of autonomy, which is operative in the acute care model, is inadequate for chronic care. In the chronic care paradigm, autonomy is something that the physician helps the patient to achieve. It is not held abstractly, as an a priori property of persons, b u t is "the achievement of selves who are socially embedded and physically embodied. ''1~ Hence, emerging trends both in spirituality and in chronic care raise the question of how to realize a meaningful life as a total person in a social context, even in the face of chronic illness. In the next section, we shall attempt to articulate the beginnings of a response to this question.
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Applications to chronic care
In the light of the newer spirituality we have described, there are certain basic principles t h a t are foundational for the attitude to and response to the person afflicted with chronic injury or illness. The most fundamental principle is the basic dignity and worth of the person who is afflicted and in one's care. This can be extremely difficult to recognize and maintain, especially with people who are physically handicapped, hostile in attitude, inaccessibly withdrawn, or bereft of hope. Yet beneath any or all of these layers dwells a fellow h u m a n being to be treated with respect. A second basic principle concerns recognition of the drive to growth, to wholeness, to fullness in every h u m a n person. Yet those in chronic care seem in so m a n y ways to have been thwarted in this drive, to such an extent t h a t their physical condition and its impact upon their whole being seem to contradict this vital h u m a n need and longing. Indeed, it readily conveys to those afflicted a sense t h a t they are of no worth because they are "stuck" in their situation. In fact, the very pain of limitations t h a t seem to prevent growth to wholeness, and the agony of feeling t h a t one is worthless, are indications of how deeply rooted is the h u m a n yearning for worth and wholeness. This suffering also reflects the t h r e a t to worth and growth experienced in the face of prolonged illness, progressively debilitating disease, or permanent physical damage. Now if there were no basic worth, there would be no difficulty. The person could simply be discarded as an outworn object of no further use. And if there were no drive to fullness, nor other basic needs, the person could also simply be provided with physical needs and left as he or she is. Yet if the person is of intrinsic worth and longs for a fullness of life, then a response to t h a t worth and longing is called for. Moreover~ since the person afflicted is in a situation t h a t seems to limit one's very personhood, then an appropriate response will have to take into account this contradiction. Such a response cannot contain any elements of condescension or pity. Such attitudes are a negation of worth, since they presume t h a t the object of one's attention is an inferior being. To act from these attitudes is simply to demean and in some way reject the basic h u m a n n e s s of the other. It can readily provoke hurt, frustration, anger, and sadness. At the same time, we cannot presume to understand the suffering of another, especially if it is more intense t h a n a n y t h i n g t h a t we ourselves have known. We can r a t h e r respect the sorrow of another, as part of the mystery of t h a t person. And we can give it space in the silence of our attention. However, while recognizing the drive to fullness of life and therefore the drive to growth in this direction, we are also quite well aware of situations in which there is little or no awareness, or awareness is confused, and a person
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lingers on who will die in a matter of days, weeks, or months. As of this writing, a close friend has been visiting his mother, and feeding her virtually every day for several months. She is paralyzed on one side from a stroke, is now in her eighties, has some mental confusion, and apparently no shortterm memory, although older memories remain. He feels that her death would be welcome at this stage. He remarks that while little is apparently accomplished, he considers it important to visit her regularly. He is struck, too, by the number of elderly and chronically and terminally ill people who are simply abandoned. He adds that what he calls this ongoing encounter with death helps him see through the surface game-playing that goes on in m a n y areas of life and gives him a clearer sense of his own priorities. Perhaps we can, with infinite cautiousness, make a distinction in chronic care between those who are capable of some personal growth to wholeness despite or through their affliction and those in a sense whose lives are apparently over, completed to whatever extent possible, and who remain alive in a confused, incompetent, or permanently vegetative state. In the first case, the appropriate attitude is one of fundamental respect for the person and respectful assistance toward whatever h u m a n growth is possible. In the second instance, provided we do not sell short the potentialities that are there, the basic response is one of treating the person with a basic respect as a fellow h u m a n being. Let us examine these a little more closely, beginning with assistance toward growth despite enduring afflictions. One aspect that is over-stressed in our society is physical appearance. Yet basic hygiene, cleanliness, neat appearance, and discreet grooming can be expressions of self-esteem, and can help maintain it in a debilitating situation. Unobtrusive assistance in this regard can be helpful, whether in gently encouraging people to keep up their physical appearance or in helping to supplement their own ability in this regard. A few years ago a woman crippled from birth and further disfigured from burns, who has struggled to become a practicing psychologist, summed up her situation in these words: "I am not what you see. ''11 She was affirming an inner wholeness t h a t did not seem to her to be reflected in her physical appearance or in the response that this appearance tended to generate in people. Hence, we can assert the importance both of assisting in the attention to physical appearance, and at the same time insisting on seeing behind the outer form to the person who might look quite different to him- or herself and to others on the inside. Since spirituality is so intimately related to our embodied selves, it is also important to recognize that the person, irrespective of the debilitating effect of chronic illness, remains a sexual being. Acknowledging this fact and creating the conditions that allow men and women, if they so choose, to maintain some form of sexual intimacy in their lives, either within an institution or at home, is basic to their sense of self.
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Physical pain and discomfort can also make our development as h u m a n persons more difficult. It can be a great hindrance to full awareness and thought, to reasonable decisions, to creative activity, to conversation, to outside interests. This is especially true where pain is severe or ongoing. As a result, any efforts to diminish physical pain and to promote maximum physical comfort are desirable. In this way, the abilities of the person to think, feel, decide, relate, and grow as a person despite the physical situation are lostered. A further factor in prolonged and incapacitating illness or injury is the diminishing of activity, the lack of productive work and involvement in the outside world. The loss of one's life's work or the seeming incapacity to have any life's work, the inability to participate directly in the political process, the sheer lack of mobility that prevents one from readily getting around and doing t h i n g s - - t h e s e are all felt as a diminishment of one's intactness as a person. They can provoke a feeling of helplessness and uselessness, and can shrink the horizons of one's awareness, interest, and influence. Here it can be essential to assist people to be as active as possible and to maintain and develop as many interests as they can (where this is feasible). One example is the English scientist Stephen Hawking, who speaks through typing into a computer linked to a voice synthesizer. 12 There are countless others who have made major contributions with their lives, in spite of a chronic illness. Growth is possible in the face of damage by redirecting and channeling one's energy and re-visioning one's life. To do so, in effect, is to get in touch, in a conscious way, with one's spirituality, and to develop and adapt it to one's situation. And yet, of course, in many cases, there seem to be very limited possibilities and the unlikelihood of much growth. An additional factor closely related to the above is the isolation that often comes with chronic illness. One's sphere of existence seems to be confined to the small world of the hospital or chronic care unit. Where a person has enjoyed good health prior to disease or accident, or even where this has never been the case, the ready contact with all kinds of people, and in m a n y instances the continual contact with family and friends is taken away. The person encounters only people doing a job "to" and "for" oneself rather than "with" oneself. The visits of family and friends and acquaintances may become tess frequent as the situation continues on and on. In any case, there is the problem of isolation. This experience of being cut off from others is an enduring form of suffering. Our sense of identity is very much bound up with our relationships to others. Our sense of worth is very much tied initially to how others treat us. The earliest image we form of ourselves is to a large extent a reflection of our parents' image of us. We discover and develop who we are in dialogue, conflict, activity, with others. The invitation, challenge, and even provocation to extend ourselves, to move in certain directions, come considerably from others. It is also in the face of others that we express and stretch the full range of our thoughts and feelings and convictions. Perhaps nowhere more
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than in friendship do we discover and express at once our own deepest self and all its dimensions while being opened to the full self of another. A spirituality of h u m a n worth and growth, therefore, would find expression in encouraging and facilitating as full and rich contact as possible between residents and family, friends, volunteers, and staff, and even pets. The difficulty of sustaining this process requires that we have ongoing means of support that give us the insight and strength to respond in extremely difficult situations. A very delicate matter, one that requires a perceptive judgment on the part of persons involved with chronically ill h u m a n beings, is the issue of what might be called a respectful challenge to people. As is the case with our own children and friends, we sometimes need to demand from people what they are capable of being, to call them to move beyond their present level or impasse. Certainly, we may merely put up with people (ourselves as well as others) where they now are, where they are presently stuck, even when they are actually capable of moving further physically, mentally, emotionally, or in other ways. To do so, however, is not an invitation to life, but a confirmation of death. At the same time, to discern when to challenge and demand from another, and when to let another be requires a very acute sensitivity to the person. Perhaps it also requires that we speak from experience. Inevitably the question of death will arise for the person afflicted with chronic illness, either because of the proximity of death or because of the ongoing experience of loss and limitation. An authentic response requires the care-giver to face his or her own death. In this situation the emerging spirituality that focuses upon growth, empowerment, integration, and connectedness offers the most potential for a good death. It is by living one's life fully that a person can be most accepting of death. 13To the extent that a person is able to grow, to become most fully what one is able to become, and to share that process in friendship, compassion, and social responsibility, a person has a sense of wholeness and completion to life. Depending upon one's religious perspective, this completion of life will take on different meanings for different people. Within the Christian tradition, for example, this response might mean being united with God. Another sense of completion might lie in the conviction that one's very identity is not that of a private isolated entity but connected in some w a y with all that is. A person does not then see his or her leavetaking as a total departure or utter annihilation. In this vein, Monika Hellwig cites the view that if the dying dimension of life is the self-gift to others, then death might be regarded as a "transition of consciousness from being rooted in the individual body to being rooted in the community. ''14 At this stage the more practical aspects of care might include responses very similar to those described above; for instance, enabling the person to continue to direct his or her own life, fostering contact rather than isolation, managing pain. More specifically, the care-giver might assist the person in
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settling his or her affairs. It may also be necessary to help the person arrange for a substitute decision maker and/or advance directives in order to extend the person's autonomy into incompetency. For dying persons who are no longer competent, comfort care should always be given. If there are advance directives, they should be respected. There are many times, even aside from impending death, when it seems that nothing can be done, when the patient's difficulties appear overwhelming and the care-givers are wearied from responding to unrelenting demands that produce no apparently tangible result. Such occasions raise deeper issues about our presence to others that remain to be addressed. These essentially concern our openness and response to the suffering of other human beings. Henri Nouwen eloquently distinguishes between "doing" and "being." There are times when nothing can be done. However, we can remain present and faithful to one another. And this faithful presence has its own intrinsic value. The people in our lives who are the most m e a n i n g f u l . . . [are] not the ones who offer all sorts of advice, suggestions, or recommendations. The real friend, the real comforter, the real c o n s o l e r . . . [is] not the person with the solution, b u t the person who sticks it out with you even when there is no solution . . . . One of the most i m p o r t a n t h e a l i n g i n s t r u m e n t s is our ability to be present to each other. 15
References 1. Haight, R., An Alternative Vision, An Interpretation of Liberation Theology. New York, Paulist Press, 1985, pp. 239-246. For a basic presentation of contemporary spirituality, see Fox, M., Original Blessing: A Primer in Creation-Centered Spirituality. Santa Fe, N.M., Bear and Company, 1983. 2. See, for example, Hauerwas, S., Vision and Virtue. Notre Dame, Ind., Fides/Claretian, 1974; and Lebacqz, K., Professional Ethics, Power and Paradox. Nashville, Abingdon, 1985. 3. McKenzie, J. L., Dictionary of the Bible. New York, Macmillan Publishing, 1977, pp. 840-845. 4. Cassel, E., "The Nature of Suffering and the Goals of Medicine," New England J. Medicine, 1982, 306, 640. 5. For a brief analysis of the extrinsic image of God and religion, see Baum, G., Religion and Alienation. New York, Paulist Press, 1975, pp. 7-20. 6. Fox, op. cit., pp. 66-80, 88-92. For a recent theology of God, see McFague, S, Models of God. Philadelphia, Fortress Press, 1987. 7. Cassel, op. cir., 640. 8. For feminist influences on the new spirituality, see, for example, Ruether, R. R., Women Church, Theology and Practice of Feminist Liturgical Communities. San Francisco, Harper & Row, 1985; and Conn, J. W., ed., Women's Spirituality: Resources for Christian Development. New York, Paulist Press, 1986. 9. Jennings, B.; Callahan, D.; and Caplan, A., "Ethical Challenges to Chronic Illness," Hastings Center Report, Special Supplement, February/March, 1988, 1-16. 10. Ibid., 12. 11. These words are taken from an award-winning television interview on the CBC television program, Man Alive. For an account of the interview, see Bonisteel, R., In Search of Man Alive. Toronto, Collins, 1980, pp. 77-89. 12. Fox, C., "Stephen Hawking: A Man For All Time," PC~Computing, August 1988, 1,138-148.
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13. See, for example, Kfibler-Ross, E., Death, The Final Stage of Growth. Englewood Cliffs, N.J., Prentice-Hall, 1975. 14. Hellwig, M., What Are They Saying About Death and Christian Hope? New York, Paulist Press, 1978, p. 27. 15. Nouwen, H., "Reflections on Compassion," Catholic Health Association of Canada Review, July/August 1980, 8, 5, 8.
