The author describes the loss of wholeness that is an integral aspect of incurable illness and suggest that healing involves restoring a sense of personal harmony that does not depend upon the integrity of the physical body. If healing is to occur, explicit attention must be given to aspects of illness such as bodily alienation, spatial and temporal disruption, the disorder of social relationships, and the loss of self-esteem. Concrete ways to minimize the experience of global disorder are explored, and the impact of cultural meanings regarding sickness and disability is discussed.

As a person living with a progressively debilitating disease I have thought a great deal about healing and incurable illness. In 1973, at the age of thirty, I was diagnosed with multiple sclerosis (MS). Since that time I have struggled with the loss of wholeness — the experience of disunity and alienation — that accompanies incurable disease in the context of Western medicine and Western (and more particularly ) North American culture. In this essay I suggest that thinking carefully about the dynamic relation between body/mind/world/self/others, as it plays itself out against the background of personal and cultural meanings, not only provides insight into the experience of loss of wholeness but also provides invaluable clues with respect to healing — that is, the process of restoring and preserving a sense of personal harmony that does not depend upon the integrity of the physical body.

My reflections on meaning and wholeness have grown out of my life experience. Over the years this illness has affected my ability to see, feel, move, stand, sit, walk, control my bowels and bladder, and to maintain my balance. Some abilities, such as sensing the position of a limb, I have lost abruptly and then slowly regained. Some, such as clear vision in one or the other eye, I have lost and regained numerous times. Other physical capacities have disappeared and never returned; for example, I can no longer walk because I am unable to lift my legs. Progression toward the inability to walk has been gradual. I now use a manual wheelchair and battery-operated scooter for mobility.

In the midst of this life journey I began graduate studies in philosophy. I became interested in the work of such thinkers as Husserl, Merleau-Ponty, Sartre and Schutz, all of whom focus their attention on the way in which we experience the world and constitute meaning. This philosophic interest has caused me to think deeply about the ways in which we experience our bodies differently in health and illness, the transformations that occur in space and time, the changed relation with surrounding objects, the existential significance of differing types of disability, and so forth. (1) However, this interest is not a purely academic exercise. I am convinced that such reflections have implications not only for medical practice and the care of sick persons but for the way in which we, as individuals, respond to the existential challenges posed by illness, disability and death.

In the course of my work I have become increasingly aware that the prevailing Western biomedical model of disease — a model that focuses almost exclusively of the “objective” patho-physiology of the disease state — captures little, if anything, of the global experience of disorder that is the patient’s illness. In a profound way, this model not only separates the disease from the person, who lives it in all its messy particularity, but also splits mind-consciousness from body, and thus does not take into account the dynamic relation between our bodies, our sense of self, our involvements with the surrounding world, our relations with others, our experience of space and time, and the emotioanl dimension of bodily being. Yet it is the disruption of this web of interrelationships that precipitates the sense of alienation that is felt so intensely in incurable disease.

Personal unity shatters vividly at the monent one receives a definitive diagnosis of incurable illness. Sunddenly all one’s taken-for-granted assumptions about the world are transformed. In that instant one recognizes that nothing will ever be (or can ever be) the same again. Every patient can recall that moment in exquisite detail. It is imprinted on the mind — the marker of a transition from one way of being to another. Even through it is more than 20 years since I received my diagnosis., I can tell you what day of the week it was, what month, what clothes I was wearign, and repeat almost verbatim the words used by the neurosurgeon. Also I can remember wishing fervently that I could go back a few moments in time because I recognized that my life had changed in a fundemental way. From that point on I would be a person liveing with multiple sclerosis.

Diagnoses mean much more to patients than simply the identification of a particular disease state. The dread diseases — cancer, AIDS, multiple sclerosis, heart disease — carry withthem a particularly powerful symbolic significance. In receiving such a diagnosis, one is forced to deal not only withthe physical symptoms of the illness, as well as the profound uncertainty that accompanies it, but — as importantly — to confront th epersnal and cultural meanings associated with the disorder. The stigma that accompany diseases such as AIDS and cancer, as well as the negative stereotypes associated with physical disability, immediately set one apart from others and contribute to a profound sense of aloneness. One is faced not only with the question “What does this illenss mean for me now and in the futre?” but, as importantly, “What does this illness mean for me in my relation with others?” These questions must be addressed again and again.

A diagnosis of incurable illness immediately alienates one from one’s body. When in good health, we take our bodies for granted. Normally we act in the worl through the medium of our bodies ina an unreflective fashion. We speak, see, hear, move unthinkingly — paying little attention to our physical capacities. Illness destroys this taken-for-grantedness. With pain, loss of function, change in appearance, the body intrudes itself into consciousness, becoming the unwelcome focus of one’s attention. Rather than being that which is routinely overlooked, the body is felt as an insistent presence that remains always at the fringes of consciousness. This forced attention to the body is disruptive and proofundly threatening.

It is threatening in the sense that it forces to recognize the sybiotic relation between body and self. I don’t just have a body, as I “have” a house, a car or a dog. In a fundamental way I am my body. Whatever happens to it also necessarily happens to me. (If I recognized nothing else when I received the diagnosis of MS, I recognized that whatever was going on in the deep recesses of my central nervous system — albeit unseen, unfelt, unstoppable — threatened totally to disrupt my existence.) The experience of illness is always the experience of both “having” and “being had.” I not only “have” an illness, it also “has” me. Although we can, and do, objectify our bodies, we do not immediately say of think with reference to ourselves in sickness, “My body has cancer, my body is going to die.”

The most cherished assumption we hold is that of personal indestructibility. In our culture this primordial sense of personal invulnerability is bolstered by unrealistic expectation about the power of science to control nature and the ability of medicine to intervene and to “fix”bodily malfunction. To discover, in the context of Western medicine, that one’s body cannot be “fixed” is to experience a most extraordinary sense of loss of control, of powerlessness, of helplessness. This feeling is intensified by the fact that the predominant focus of Western medicine is on acute illness with a corresponding emphasis on cure of disease. Thus, incurably ill patients feel abandoned by the medical profession — a feeling that is intensified when health professionals withdraw in the face of failure to eradicate disease. If healing is to be achieved, it is vital that patients feel they are not “medically” alone, that they have not been abandoned as “incurable” and, therefore, beyond help. What patients need most is someone to accompany, to be with them of the life journey that is their illness. This is especially true as they come to grips with the reality that cure is not a possibility. Although health professionals do not (and cannot) have all the answers, they are in a unique position to be present as patients confront the most profound existential questions.

Advances in medical technology also increase the patient’s perception of loss of control. In a culture that views death primarily as a failure of medical science (rather than as an inevitable aspect of being human) there is enormous pressure to prevent death at almost any cost. Consequently, as patients, we find ourselves terrified not only by medicine’s impotence to cure our disease but also by medicine’s power to keep us alive. The bodily threat to the self is accentuated by the fear that medical technology may be used to keep my body functioning long after my integrity as a person has been destroyed. This fear is at least one of the factors that fuels the debate on legalizing assisted suicide. As paradoxical as this may seem, the option of assisted suicide can provide some sense of control over a desperately threatening future. When they embrace the notion of assisted suicide, what patients fear most is not death itself but rather a process of dying (or living) that robs them of dignity and personal integrity.

As someone who lives with progressive neurologic disease, my greatest fear is not death; rather I am most afraid that eventually the inevitable progression of my disease will leave me dependent for my every need on the assistance of strangers who do not care about me. One of the most powerful acts of healing is that of assuring sick persons that they will always be worth of care regardless of the degradation of illness. Such an assurance goes a long way toward ameliorating the bodily threat to the self.

The sense of alienation from one’s body is also experienced in illness as the profound loss of possibility. My body is not simply a physiologic organism, it is the vehicle through which I interact with others and the means by which I carry our my various projects in the world. For instance my leg is more than a limb, it is the possibility (which I have) of walking, running, playing tennis or the possibility (that I may become) of learning to rock climb, of pursuing certain professional activities with my child. The significance of a particular existential loss is different for each individual, and the loss of possibility may have different meanings for the same individual at different times. Suffering is always related to personal meanings and to the context of a particular life.

The loss of possibility inherent in the body forces us to recognize the dynamic relation between our bodies and the surrounding world. In our culture we tend to think in terms of dualisms — subject-object, body-mind, body-self, body-world. However, we are not simply bodily beings we are bing-in-the-world. Loss of wholeness is experienced in a multitude of ways as dis-ability — the inability to interact with and engage the world in ways that are meaningful to us. Pain or nausea are not just uncomfortable sensations, they are the impossibility of giving undivided attention to my spouse or carrying out an important project. Additionally, physical debility transforms our taken-for-granted relations with familiar objects. For instance, a flight of stairs that formerly was unnoticed presents itself as an overt challenge to the body, an obstacle to be avoided or viewed with dismay.

The familiar world also changes when spatial dimensions shift. What was once experienced as “near” (the bathroom, the next-door neighbor’s house, the office) is now experienced as “far.” When I could walk, the distance from my office to the classroom (about 30 yards) was unremarkable. As my mobility decreased, the office appeared “bear” to the classroom on the way to the lecture, but “far” from it on the return journey. Now, if I were deprived of my wheelchair, the distance to traverse would appear immense. The answer to the question “Is it too far?” bears no relation to objective measurement of distance. For me it depends upon what is between here and there. Are thee obstacles preventing access with the wheelchair? Is the terrain suitable for my scooter? It also depends upon physical stamina, level of fatigue, and even the will to make the trip. The world may shrink to the confines of the sick person’s house or to the boundaries of one’s room. This spatial transformation can be a source of great suffering because it denotes the shrinking of meaningful involvements in the world. Also, the progressive dwindling of space has personal meaning because it represents different stages of illness.

Space has emotional import in another sense. We not only act in space, we dwell in space. We all have places that are particularly significant to us — the beach we walk along together, the bed in which we share our most intimate moments, the garden that gives us a sense of peace. Just as a piece of music evokes a flashback to a time and place, so a physical space can evoke a deep and profound meaning in us. Illness may engender a transformation, or loss, of these most precious spaces. Achieving a renewed sense of harmony means learning to dwell differently in the intimate spaces of our lives.

In spite of our cultural tendency to separate the physical from the emotional, we not only act in the world, we feel the world. We know this well in moments of grief and intense happiness when the world is transformed for us. Indeed, at those moments, we find it hard to comprehend that for others the world seems unchanged. The emotional significance of space varies according to personal meanings and the context of a particular life. While spaces such as a hospital room or a bed in the intensive-care unit evoke a sense of dread in patients and their loved one, these spaces have a quite different meaning for health professionals.

It is important for care givers to pay attention to the emotional aspect of space — to ask not only “How are you doing in everyday life?” but “How do things feel?” Knowing how the world feels to the individual (exceedingly effortful, demeaning, frightening) allows one to change the meaning of worldly involvement. If a patient senses the surrounding world as overtly restrictive, for instance, strategies can be developed to open up space. These could be as simple as encouraging the use of aids such as a walker or wheelchair, or they could involve exploring innovative ways to transform the experience of being in space. I am thinking here of possibilities such as meditating, listening to music, expanding horizons through immersion in literature or art.

A most important aspect of illness is a change in the significance of time. In our culture we think of time as a series of more or less discrete moments along a time line of past, present and future. With the prospect of increasing debility, the future assumes an inherently problematic and threatening character. So pervasive is this threat that the future engulfs the present. An uncertain or dire prognosis may cause the sick person to start living as if already incapacitated or as if death is imminent. For instance, a survey carried out at the MS clinic at the University of Western Ontario, London, Ont., suggested that simply receiving a diagnosis of MS was equivalent to moderate disability, regardless of the actual degree of physical impairment. (2) In the face of overwhelming uncertainty, it is hard to resist the natural impulse to project one’s thoughts into a dreaded future. One is preoccupied with what may happen or with the significance of a present symptom for one’s future prognosis. Since one cannot deal with what has not yet happened, fear is increased and the future appears unmanageable.

Time may also be disrupted in that pain and debility in the present moment demand complete attention. In this event the present assumes and enduring and inescapable quality. One longs fora future time when all this will be over. The present is not a time to be lived but rather a period to “get through.” At the same time, however, the longed for future is extremely tenuous.

Alternatively, one may be tempted to cling tenaciously to the past. The knowledge that I will never again be the way I was (because of a change in my body or an alteration of physical function) concretely reminds me that a certain way of bodily being, and the way of life that accompanied it, is over. Invariably this loss must be confronted again and again in light of increasing physical or mental debility.

Perhaps the greatest challenge to living fully in the present relates to the significance of the future. Normally we act in the present in light of anticipations that are to come — more or less specific goals relating to future possibilities. This taken-for-granted future disappears. One can think only of the things one will be unable to do, the personal relationships that will never be, the projects that will never come to fruition.

Societal and cultural meanings exacerbate this experienced loss of possibility. In our culture, for the most part, we are future-oriented. We act now in light of projected goals and plans. We work toward achieving future aims, future rewards. The metaphor for a purposeful life is that of the journey, the goal being to reach a more or less predetermined destination. This metaphor is understood in terms of motion — getting from here to there. In such a futuristic goal-oriented society we are, so to speak, always on an interstate highway focused on the quickest and most efficient way to get to our destination. We are not much interested in, let alone aware of, the actual process of journeying. If and when we reach a projected destination, more often than not we immediately set our sights on another one.

This emphasis on future-directedness causes us consistently (on a daily basis) to miss the value and importance of the present moment. The present is valuable only insofar as it contributes to the future. Consequently, when we are confronted with the actual loss of our own future, we experience a profound feeling that life in the present has no meaning.

If healing is to be achieved, patients have to learn to live fully in the present moment — neither preoccupied by dread for the future, frozen in the act of trying to recapture the past, nor overwhelmed by the everyday demands of debilitating illness and paralyzed by the experience of uncertainty. In our goal-oriented society, this means deliberately changing our perspective on the relation between present and future, as well as paying attention to the ways in which the meanings of past and future invade the present.

With respect to future threat it is essential that care givers ask patients what their particular anxieties are. Once concrete fears have been identified, specific strategies can be developed to deal with them. This gives patients a certain amount of control and allows them to focus their energies on the business of living, rather than the process of dying. Nevertheless, as Anatole Broyard noted in his book, Intoxicated By My Illness, “there is a time of the night between midnight and dawn when people despair.” (3) If one is to remain intact in the face of progressively debilitating illness, one has to refuse to go where the imagination insistently calls. In those hours when I am most often beset by the terrors of the future, I have learned to say: “I will not go to that place. I will think only of now. Of this . Of this moment.. Of what I have. Of what gives me joy.” It is an act of will. Like many others, I cannot look the possibilities of the future fully in the face and remain intact. A concrete way to initiate the process of healing is to develop ways of focusing the mind in the present moment.

Living fully in the present means letting go of the past. However, letting go of the past is necessarily an ongoing process. Changes in physical appearance and functional capacity provide reminders of the continuing transformation from one way of being to another. In the is respect, a vital aspect of care is the chronicling of loss. What sick persons seek is a genuine recognition that what is happening to them is significant not just in medical but in existential terms.

Achieving harmony in the face of illness means learning to live with bodily disorder as a permanent way of being. Consequently, one has to balance between the need to coexist with, and distance oneself from, one’s own body. With respect to coexistence, the shock and realization that I am in a symbiotic relation with my body can provide the impetus to become involved with, and take responsibility for, one’s body. In this sense I am motivated to reclaim the body that I am, especially since I recognize I cannot hand it over to medical science to be “fixed” and returned to me in good working order.

Becoming attuned to one’s body is beneficial, not just in terms of physiologic effects but in reducing the sense of bodily alienation. The act of taking the body back gives one a sense of control. In addition, mastering new ways of being-in-the-world, such as learning successfully to negotiate space in a wheelchair, is an empowering experience that changes the significance of bodily disorder.

With a cultural perspective that equates health with complete physical well-being, the prevailing emphasis in Western medicine of cure of disease ill prepares us for the task of living with sickness and death. We tend to believe that no amount of pain or debility is acceptable. Consequently, in illness we spend a great deal of energy and emotion in fighting pain and rejecting our changing bodies — rather than attempting to live with them. An alternative perspective that may help us in this regard is that of practitioners such as Dr. Jon Kabat-Zinn at the University of Massachusetts Medical Center, Worcester, Massachusetts. He provides his patients with rigorous and systematic training in “mindfulness” — a form of meditation that moves the explicit focus towards the body, and into the pain, rather than away from it. (4)

Distancing oneself from one’s body can also help to change meanings. As a person with neurologic disease, I know well the feelings of shame, disgust and self-loathing that invariably accompany indignities such as loss of bowel and bladder control. If patients can learn to separate feelings from bodily functions, to view the “mess” of sickness dispassionately, they are less likely to feel degraded by illness.

Humour can play a transformative role in counteracting negative feelings such as shame, anger, frustration and disgust. The ability to laugh at oneself and the absurdity of one’s situation makes life bearable even in the direst of circumstances. It is a concrete way to “de-fuse” emotionally painful circumstances. Often others find humour to be an inappropriate response — an indication that patients and their families are denying the seriousness of the situation. However, humour is not necessarily inappropriate. Indeed, it is an integral aspect of joyful living. Distancing from the body can also be achieved by deliberately focusing outwards, engaging in activities that take up one’s concentration — reading, working, listening to music, pursuing hobbies. The goal is to dis-place the body as an unwelcome and insistent presence.

In incurable illness the threat to the self at its deepest and most profound level is, of course, the existential threat of non-being. However, loss of self-integrity is also intimately related to cultural meanings regarding illness, disability and death. A formidable barrier to the preservation of self-esteem is the emphasis in our culture on the importance of “doing” as opposed to “being.” More often than not, a person’s worth is judged according to his or her capacity to produce or on the ability to achieve a certain professional status. The emphasis on productivity, the accumulation of material goods or the achievement of a certain status, focuses our attention toward on our involvements, our impact on the world. Such a stance is active, controlling and (above all) oriented toward the future. Consequently, as activities become circumscribed, as roles inevitably change and as the future disappears, this cultural emphasis on the importance of “doing” directly contributes to a sense of diminished self-worth.

Moreover, the cultural emphasis on self-reliance and the ideal of autonomy makes it particularly hard to request and accept assistance from others. Dependence on others is perceived as weakness. There is a strong cultural message that we should be able to look after ourselves, make our own decisions, run our own lives. Issues of dependence and interdependence intrude upon even the most intimate relationships. Serious illness necessarily changes our roles as wife, lover, friend, parent, breadwinner. Incurable disease is never simply a disorder affects a particular stricken individual, it strikes equally at family members and other intimates.

Cultural attitudes towards death and sickness also contribute to loss of self-esteem. Ours is a culture obsessed with physical fitness, sexuality and youth. There is the clear assumption overtly manifests itself in social perceptions of disability. When strangers look at me, what they see is the wheelchair. They make the immediate judgement that my quality of life is diminished and that my situation is an essentially negative and unhappy on. In the first place, since my mobility is limited, others conclude that my intellect is likewise affected. For instance, in my presence strangers invariably address questions to my companion and refer to me in the third person. “Where would she like to sit? Does she want us to move this chair?” (When we travel through airports my husband is usually asked: “Can she walk at all?” We now have a standard response. He says: “No, but she can talk!”)

If healing is to be achieved it is vital that we recognize the extent to which cultural, as well as personal, meanings contribute to suffering and weaken the resolve to live well in spite of illness. For example, in my own situation, preserving self-integrity means deliberately ignoring cultural meanings with respect to disability — choosing to construe my wheelchair as an “instrument of freedom” rather than as a “symbol of disability.” This is not simply a matter of semantics. If individuals feel ashamed to use devices such as wheelchairs, they will not do so. (This is also true with respect to an individual’s willingness to take medications, undergo treatment, or even seek professional help.) An important aspect of care is assuring individuals that illness and disability do not denigrate self-worth. This means assisting them to change the significance of preconceived cultural and personal meanings.

Recognizing that one always has the capacity and opportunity to make meaningful choices (even through such choices may be severely circumscribed) is essential for the task of preserving self-integrity (healing). As Viktor Frankl has so eloquently noted, even tin the most difficult circumstances, everything can be taken away from a person except for “the last of human freedoms” — the freedom to choose how to react to any given circumstances. (5) This is no empty freedom. It allows one to assume responsibility for the things one can change, while accepting the fact that there are circumstances that will always be beyond one’s control. The freedom to choose one’s way is not merely some sort of abstract, contemplative activity. It involves many aspects of living with illness. Concrete and individual choices can be made with respect to such issues as pain control, types of medication, treatment options, and when to engage and when to forego certain types of care.

The possibility and necessity for choice is an integral part of the dynamics of hope. For those with incurable illness the choice between hope and despair is a choice that must be made not once but every day. Hope cannot primarily be related to cure of disease. Nevertheless, to be seriously and incurable ill is not to be hope-less. Hope relates, rather, to the ability to face forthrightly and with courage whatever comes one’s way. Hope is tempered with flexibility, a willingness to remain open to the possibilities of different ways of being-in-the-world. In this respect, hope is bolstered by the affirmation of others, the knowledge that one is not in this alone and will not be alone in the future.

In our culture, incurable illness almost invariably engenders a profound sense of loss of wholeness, which includes feelings of bodily alienation, a transformation in the familiar world, a change in the significance of time, a disruption in social relations, and a profound loss of self-esteem. Understanding these various facets of loss of wholeness can provide important insights into ways to initiate the process of healing — a process that enables individuals to attain a sense of personal unity and harmony despite physical debility.