A Playful Approach to Chronic Disease

Refusing to Fight:
A Playful Approach to Chronic Disease

Gerald Pillsbury
Western Michigan University

In Sarah Cunningham-Burley & Kathyrn Backett-Milburn, ed., Exploring the Body.
New York: Palgrave, pp. 55-77.
(Please do not quote or cite without permission from author and publisher.)

I do not want to end up in isolation, even in the midst of things;
I never want to become accustomed to a dry, little life.
And I realize fully that to live otherwise is up to me.
Maxine Greene, 1995

Rarely have I found any experience to be wholly beneficial or wholly harmful, yet the literature and our common ways of speaking depict the experience of chronic disease as uncompromisingly negative. We conceive of it as always intrusive, restricting, dreaded. Such thinking leads us when discussing the social consequences of the experience to focus almost exclusively on the troublesome, limiting, separating effects. We talk about loss of functioning, the dissolution or hardening of relationships, and the diminishment of self.
You may object that in fact we do regularly acknowledge a positive effect of disease on people's lives. Those living through such experiences frequently report that they reprioritize their lives, curtailing unrewarding, unimportant activities. Cancer survivors often adopt healthier patterns of eating, begin regular exercise schedules and stop smoking. Migraine sufferers may more consistently monitor levels of stress or take up yoga. Multiple sclerosis (MS), lupus, tubercular and Parkinson's patients, among
many others, may spend greater amounts of their limited energies on enriching productive relationships with loved ones.
But these advantages, however, come from the patient's reactions to the disease which he or she likely continues to experience as an unwelcome intrusion necessary
only to force oneself to break through bad habits, animate deadened sensibilities, or awaken a hardened heart. One learns, perhaps creatively, heroically, honorably, to make the best of an unfortunate situation. If prior to the disease the patient had been sufficiently reflective, the unpleasant experience would be wholly unnecessary, at best merely unenlightening and at worst profoundly pernicious.
Surely, from our customary perspective it seems only natural to think negatively of disease itself and so perhaps, you will find what I will attempt in this paper quite perverse for I intend to search for the positive effects of chronic disease--the benefits such a disease may offer. I seek to extend Oliver Sacks' foray into those "strange waters where…illness may be wellness" (1990: 107). In this nebulous realm, illness and health mix with illness sometimes constituting a greater good than normality. Here rather than debilitating, we come to see disease as 'enabling'.
Thus, this paper carries out a thought experiment. If we imagine a subject who is already reflective and self-reflective, what advantages could he or she gain by having a chronic disease? I look for advantages that make the experience of the disease as a whole a true advantage over not having it, benefits that might even make it an experience worth choosing. Such an experiment attempts to change the metaphors, in Lakoff and Johnson's broad sense of the term (1980), that structure the experience of disease. Would it be possible to experience a chronic disease, even a progressively debilitating and generally feared one, as, if not a welcome experience, at least as one that offers advantages as well as limitations? What would such a transformation in our thinking take?
For me, such an experiment is not simply a thought experiment, nor an academic exercise. For the past twelve years I have lived with a slowly progressive form of multiple sclerosis. I am brought to wondering about altering the perspective because the idea that for the next twenty, thirty or forty years I must engage in a fight to the death against the disease feels exhausting. Moreover, the combative metaphor greatly restricts the meanings I can make of my life. Nor, I suggest, should the answer seem irrelevant to the reader even if you are currently not living with a chronic illness. After some point in our lives, chronic rather than occasional illness will be the rule rather than the exception for the majority of us. To this point, Hoffman and Rice (1996) estimate in a recent article in the Journal of the American Medical Association that 100 million Americans, more than one out of every three, currently live with some kind of chronic disease.
What we will find through this investigation is that it is possible, albeit perhaps only temporarily and with great difficulty, to alter purposefully our experience of chronic disease. Admittedly, I have enjoyed only temporary success at doing so. At times, anxiety and depression still take over returning me to the metaphors of loss and limitations from which I seek to escape. At other times, what obstructs me, often before I am aware that I am using them, are our common ways of talking and perceiving the disease. But so far at least, I have been able at times to work through these limiting emotional and experiential states and into a much more rewarding perspective on life with the disease. This perspective consists of framing the disease as a form of play.
My body, much as an intimate friend might, is asking me to play, in particular play with how we create and maintain reality. The type of play I seek to engage in is a serious one and thus, not for everyone. Success comes from accepting the offer unconditionally, enjoying the game and responding imaginatively.
Since this paper focuses on social knowledge, I will specify the investigation's driving question even further to "What can chronic disease reveal about the social dimension of self? That is, how people connect with one another?" Merleau-Ponty (1962) argues that the intersubjectivity that connects us to each other and allows us to understand one another depends upon our being able to take our bodily experience as essentially similar to each other. Our being able to construct common projects to engage in requires this assumption of commonality of bodies. If that assumption is threatened, my ability to sustain the life-world (Schutz and Luckmann, 1973) we have built and shared is compromised. To continue to live together, living together in the sense of meaningfully enriching each other, we will have to find ways to construct a new world out of recognizing just the opposite of intersubjectivity; we must begin by acknowledging that our fundamental bodily experiences may radically differ.
My task in this paper then is to elaborate in what sense one can see disease experience as play, what it takes to adopt such a perspective, and the relationships with others such a perspective generates. The plan of this article is to present first the assumptions that will direct this investigation, second use a phenomenological approach to articulate the linguistic constraints that limit the relationships I have and then explicate a playful perspective toward my experience. Finally, we consider the social possibilities of this form of play including the moral dimensions of such relations.

Three Assumptions
A first assumption guiding this inquiry is that all knowledge is embodied (Johnson, 1987; Merleau-Ponty, 1962; Polanyi, 1958; Shotter, 1993). What we know and how we know it greatly depends upon our bodily experience. Our bodies 'know' things we can not always express. For example, our bodies recognize situations and probable outcomes for good or bad (Dewey, 1934). They habitualize knowledge that would be too cumbersome to keep conscious (Camic, 1986). They determine the 'aptness' of metaphors fundamental to further thinking processes (Johnson, 1987). They allow us to recognize the identities of people and things (Polanyi, 1969). Indeed culture itself is grounded in the body (Csordas, 1994). In short, a great deal of recent scholarship returns us with ample support to Mauss' observation a half-century ago that "the body is at the same time the original instrument through which humans shape their world, and the original substance out of which the human world is shaped" (1950, paraphrased in Csordas, 1994:6). Should our bodily experience change in fundamental and lasting ways, as it may do with chronic disease, it seems inevitable that one's knowledge—the practical and eventually, if attended to, the contemplative/ theoretical as well—would undergo a fundamental transformation as well.
A second assumption concerns the nature of this world we live within. It has two orders (Berger, 1986; Kirmayer, 1992): one of the body and the other of the text and the two are inextricably intertwined. Thus, the sick body and how we talk about illness and the body are intimately connected. Both orders are worlds of meaning. Meaning infuses itself throughout everything we experience and how we experience it. For further elaboration of the idea of meaning, I turn to the radically social constructionist view of Gergen (1994) and Shotter (1993). Our lives consist of hopes, purposes, plans, histories, memories, emotions, and play—all constructed through language. Language and the meanings of our words come prior to and after, any form of individual perception, contact, awareness, or behavior. Meaning is not individually or personally created or arrived at, a view that contrasts sharply with many others called constructivist; rather it is always negotiated within each context and between conversants (Garfinkel, 1967; Gergen, 1994). Social constructionists do not view meanings as housed within individuals because they do not arise out of individual accommodations to the outside world such as Piaget argued. Rather they are continuously constructed and reconstructed through dialogue and interactions with others and as a result can only be located in the social world, that common realm between individuals.
The most salient feature of the meaning of words for these social constructionists is not the referential function of words. In fact, they argue we have been profoundly mistaken in our psychology, sociology, anthropology, political science, and the other social sciences because we have been captivated, indeed hypnotized, by the referential conception of language. Language primarily serves rhetorical, that is persuasive, argumentative, and performative, ends. Even the referential functions of language are often preformative. They are of the variety, "If you attend to X, you will see things in this way and want to do Y" (Shotter, 1993:34).
For example, if during a conversation I say "I have little feeling in my legs," I have created a situation that directs our attention and behavior including at least the next few comments. To be intelligible and polite we must both connect what we say next to that statement. With my next words, I am now obligated to show you how to take the comment, either as a fleeting observation not worthy of further attention, as a grave concern that requires empathy, attention and caring words and actions, or as some other familiar linguistic tool of social action. Once I commit us to one understanding, I have ruled out a great many other possibilities at least temporarily. I have limited the replies you can make. You must attend to the aspect of our environment I have pointed to and respond, either in support, indifference or disbelief. Whether you want it to or not, how you respond expresses your moral character. You can then continue our attention on my experience or refocus it elsewhere but if you do not do either in a socially acceptable fashion, you have made yourself nonsensical.
My third assumption concerns the nature of the self. I turn to Mead (1934) and more recently Crapanzano (1982) to adopt a highly linguistic and a highly dynamic view of selves. How, where and with whom I locate myself fluctuates continuously and may be only tangentially related to where my body is or what it does but is nonetheless never wholly unrelated to my body. At times I expand and enter into a commonality with others, such as when I use my body and the pronoun 'we' to create solidarity (Pillsbury, 1996). At others I impose distance or withdraw, constricting myself into an 'I' (Pillsbury, 1998).
Together these assumptions lead us to take language very seriously as the primary tool in the construction of our experience and remember that play is a perspective created through words.

Restrictive Roles
Chronic disease narrows appreciably the range of social roles available to a person. The person lives considerably restricted even though many times, perhaps most times, he or she may have little awareness of these constraints. Let me spend a little time articulating the box I have found myself in before exploring how I might get out.
I regularly find myself acting sick. By acting I do not mean pretending or any kind of theatrics or histrionics. Rather I watch myself engage in behaviors that fit a role. Often it is not clear even to me whether I am doing it intentionally or not. Do I limp more when I park in a handicapped spot or is the stiffness simply a result of sitting too long? Or perhaps it is a result of the subtle reminder of my condition evoked by the symbol on the parking sticker. Aspects of this role include accepting help for many physical tasks more readily than before I was diagnosed, engaging much more often in talk about the state and capabilities of my body, responding regularly to people's reactions to the state of my health. These responses vary widely and often include explanation, flippancy, accepting sympathy or sometimes expressions of anger. I avoid even moderate walks, warm environments and exposure to the sun. I rest often by sitting or lying on a couch and severely limit the plans I make for the future whether those plans are for future years or simply a list of the day's tasks.
But what I mean by the sick role goes much further than those rather obvious limitations. It involves a certain quality of passivity in my relations with others. I find myself restricting gestures while I speak so as not to wear myself out but also when conversing, I measure the energy it would take to dispute a point or engage in thoughtful discussion. Because we can never anticipate all the ways in which our words can be taken, I can never be quite sure when my usual speech is going to reveal myself. Common phrases, such as "I need to run an errand," now regularly take on an ironic quality in my mouth. The sick role involves concern and sensitivity that the exchanges that constitute friendship may have become unbalanced. I worry that others may be doing more for me than I am for them
As Goffman (1959) showed us, in our presentations of self to others, we constantly construct and re-construct ourselves. Much of my self-work involves dances to stay between the two extremes of (1) self-indulgent, hypochondriac and (2) disinterested in myself, disconnected from my body, unrealistic about my future. I frequently question how descriptions of my current state depict, and construct, me. As continuing the same discouraging tale? Can I express myself, that is portray myself, as depressed or will that move lead to living out what is not yet fully real? Or do I depict myself as accepting, not dwelling on the losses and limitations, perhaps even unrealistically happy? As refusing to accept my future? As distressingly reversed when I do attend to symptoms? Recall the social constuctivist assumption guiding this investigation. I do not see either description, or any other, as portraying a "real me." Rather my language constructs me as I continuously shift among several linguistic alternatives.
While constructing myself I am constantly alert to the effects of each construction on my relationships with others. A negative depiction risks making interactions with me more difficult and less rewarding for others, which may encourage them to be more reserved, take fewer risks, and seek specific kinds of conversational or interactive rewards before continuing. More positive self-portrayals may likely put the other into a supportive but wary role. If the other sees me as needing to deflect attention away from the disease, he or she may steer the conversation away from the disease and yet at the same time remain watchful in case we move into unhealthy delusion. He or she may hesitate to direct attention to the negative aspects of the disease. Other descriptions of my experiential state similarly restrict the roles through which others can respond to me. In every case, people are likely to monitor their interactions with me a bit more closely than with 'healthy' others for our culture sees interactions with diseased persons as particularly revealing one's moral qualities, particularly the depth of caring, the extent of generosity (of time and concern) and a host of related virtues.
Friends and those who offer interest and support similarly find their roles stilted, unfamiliar, even uncomfortable. They are likely to monitor more self-consciously than usual the effects of words and actions on me. Recently the irony of a friend's comment drew across her face when she hoped aloud that she had not "run me ragged." People interacting with me may find themselves devoting unusual amounts of energy to monitoring my condition and attending to even small signs of change in my condition. Or, in the opposite direction, they may find themselves somewhat anxious and uncomfortable around me, chaffing at the limitations the come from sticking with me for awhile.
When I report improvements, determining an appropriate response is rarely easy. I can imagine a number of dilemmas such people may find themselves facing if they reflect before speaking. How can one show oneself to be caring and yet at the same time realistic and respectful? How does one express compassion without treating me as less than a fully responsible and capable adult? How does one show caring and support for chronic illness without insinuating an unrealistic expectation of recovery? How does one signal supportive empathy by expressing sadness, alarm, or disappointment without initiating or heightening such feelings in me? While common to many relationships, as noted above, in relationships with diseased people such reflections regularly carry a heightened moral poignancy. There is always the moral expectation to care but considerable ambiguity about how best to exercise this obligation. As a result, these worries and reflections constrain the flexibility of established relationships and the creative generation of new ones.

Disrupting the Linguistic Basis of Social Reality
To live in the human world means to live with others, to coordinate my actions with theirs and vice versa (Shotter, 1993). The most pervasive system for organizing such coordination is language. Notice that by language constructing and sustaining the world we live in, our world and our lives are socially, not personally, constructed. But for me, MS has thrown into doubt language's ability to sustain this world; it has limited the range and diminished the quality of the relationships available.
Consider the various ways the experience may be expressed. Can I adequately share my experience with you through descriptions? Have I any practical alternatives? 'Adequate' and 'practical' in my two questions must be judged by the quality of the relationship the words create between us. I am following the lead of the social constructionists previously mentioned and Billig (1986) and Crapanzano (1982). What concerns me here is not sharing conceived of as reporting an essentialistic slice of reality originating from an individual source. Rather sharing is a form of joint action. It is a type of participation in our mutually constructed social life and one in which mutuality is explicitly highlighted. My shift from the verb 'report' to 'participate' is deliberate. Again, I want to highlight that contrary to common assumptions the slices of illness experience that concern this investigation do not emanate from a private reality identified through feeling or introspection and reported in speech. Rather, we create them through our engagement with and in one another, through our joint participation in mutual activities which includes dialogue. 'Adequate' and 'practical' in the questions above ask us to consider whether a particular form and instance of sharing enables us to engage in meaningful joint activities, whether it enables us to go on together.
To exemplify the difficulties MS creates, consider the limited relations established when I try to describe the sensation in my feet. I might start by saying that my feeling there has changed considerably from what I remember it being ten or fifteen years ago and go on that I experience tingling, sometimes burning, sometimes a deadening, heavy sensation. I might point to a specific spot almost anywhere on my feet and lower legs and tell you that if you poke there with a pin, it feels sharper than if you poke my arm. At another spot even close by, the poke would feel duller or I might not be able to feel it at all. To paint a more accurate picture, I would need further to explain the temporality of such sensations. The various sensations change constantly, though seemingly without pattern. Where I today feel acute sharpness from a poke may tomorrow register nothing at all.
I am tempted to say I lose the feeling in my legs, arms, hands, and parts of my torso and often do say just that. But that description is shorthand; it does not hold up to thoughtful reflection for loss is an oversimplification. Most often I do still feel in these affected parts. In fact, in one sense I feel more constantly, urgently in that part of my body. The sensation is somewhat like when a limb falls asleep but different enough that I cannot comfortably use that image. These body parts 'buzz', clouded by diffuse sensations that insistently draw my attention back. Usual sensations, what I can take without attention, feels covered over, cloaked by another layer of sensations. The 'noise' or buzzing felt there occupies a great deal of my attention, but my body/my self—the interpreter that I call 'I'—cannot make sense of these foreign sensations. Perhaps it is lack of practice. Certainly over time I have been able to put the new sensations in my feet and legs aside even as they continue, just as I had with usual 'normal' sensations there before I had MS. The buzzing is not the only change in these body parts. The coordination has changed. From inside, the skin feels stiff and swollen. Grasping items and bringing them in front of my face for inspection while not yet difficult has become much more of a thoughtful, intentional process. Nevertheless the central occupation of my attention is this noise.
Attempts at literal description do not, though, establish particularly satisfactory relationships; they do not invite you into my experience. Literal language sets up a reserved relationship, the kind of relationship typical to patient and doctor--a relationship, it is often pointed out, which often focuses on managing the disease as a biological problem rather than understanding the phenomenal experience of the human being (Toombs, 1990). What Buber (1965) calls "I-it" relationships are those in which one person 'manages' another, treating him or her as a problem to be solved, which means treating the person as less than fully human. Literal, straightforward descriptions of disease experience regularly establish such I-it relationships and so seem artificially limited. The linguistic device we use most frequently to relate complex or idiosyncratic experience, and thus relate to the other as a full human being, Buber's "I-thou" relation, is metaphor.
I suspect all MS patients search for metaphors whenever we seek a close relationship with another person, the kind of relationship that invites another to enter into our experience. These relationships require language that moves the other out of him- or herself. Such movement requires metaphor even when we are not aware of using such tropes. In fact, the more we ask 'literal' descriptions to do such work, the more they become metaphoric. Certainly many of the descriptors I used above--'buzzing,' 'tingling,' 'burning,' 'deadening,' 'heavy,' even 'sharpness'—are metaphoric. Only when understood as metaphors, can we begin to adequately understand each other.
Though better than those established by literal description, relationships created through metaphor have critical limitations and obfuscations that prevent solidarity, holistic understanding, immersion in a common MS experience, and complete sharing of each other. While it is undoubtedly the case that all metaphors, indeed all language, cannot establish the relations with others desired, and so we feel that our understanding is not adequate, in the case of chronic disease, language's failure is accentuated and thus more disturbing. To illustrate how metaphors tend to limit relations, consider two metaphors I use in the hope of capturing and sharing some of my physical sensations.

Two Illustrative Metaphors
The metaphor that perhaps most satisfactorily captures one of my symptoms is that of feeling sunburned. The sensation occurs regularly now near the end of the day. Even though I have not been outside, my feet and lower legs feel sunburned. The skin stings and stiffens, the sensations of the skin's pliability and resiliency diminish. The metaphor feels appropriate in that my legs feel much the same as I remember feeling when sunburned. Admittedly the last time my legs were actually sunburned was some time ago, perhaps ten to fifteen years. If I were to have the two experiences closer together, I might well notice differences more clearly, but for now my sense is that they are rather similar.
The metaphor fits, though, only for the aspects of the sensation I habitually concentrate on. I can, with but a little effort, call up to awareness other aspects of that experience that do not fit the metaphor and make it feel less apt. The skin is not red, nor does it feel hot, nor does it radiate heat. Touch and pressure do not increase the discomfort as they do with a real sunburn. Nor do I associate with it memories of activities such as playing at the beach or working in the yard. Sunburns do not usually go away by morning, but these sensations largely do. The burning sensation is often accompanied by great fatigue, more pronounced in the legs than the rest of my body. The fit of the metaphor gets further complicated if I focus on the difficulty I have in relaxing the muscles in the legs, the seeming opposite of what one experiences after an exhausting day at the beach. Even when I have let go of my legs attempting to rest them on the couch like sacks of flour, I find muscles in them—found through visual inspection and physical manipulation, not by intuitive perception—that continue to tense and exhaust themselves. To the extent that the sunburn metaphor directs me to overlook these aspects of my physical state, it fails to capture my whole experience. To the extent that it makes it more difficult for my conversant to grasp any of these characteristics, the metaphor fails to share the experience.
Another everyday experience seems even less satisfactorily conveyed by the best metaphor I have found so far. An exacerbation seven years ago left me without much feeling in my legs for a period of several weeks. What my partial recovery returned is a feeling which I can best describe as that of continually wearing heavy wet socks. While the best I have found, the metaphor feels even more incomplete than the sunburned metaphor. It misses the buzzing feeling reverberating in the legs and overlooks the replacement of a unified sense of agility, strength and readiness with (disjointed?) sensations of stiffness, fatigue and weakness. And of course, each of the descriptors I just used "buzzing," "stiffness," "fatigue," and "weakness" are likewise metaphoric and so incomplete and inaccurate, even potentially misleading, expressions for the experience.
What comparison of the two experiences highlight is that metaphor and language generally are ways of directing attention: what to emphasize, what to overlook or ignore, what to remember and how to remember it. While every metaphor has aspects that do not fit, good metaphors direct attention away from these aspects to those that do. My metaphors may be most effective at directing my own attention and I use them in an attempt to do the same to my conversant. Good metaphors help one overlook what does not fit the description.
The desire to 'get it right', that is to find a metaphor that embraces every aspect of the experience, reveals the limitations of metaphor for establishing relationships. As indicated earlier, my goal in sharing experience, though often not acknowledged, is ultimately not a matter of giving information. Rather it is a matter of establishing and continuing relationships that enrich and educate both parties. Worries about 'getting it right' mislead us, deflecting attention away from relationships and towards the empty pursuit of essential experiential realities. I seek rewarding, enriching, malleable relationships which means necessarily, fully embodied, relationships. These are relationships which enable us to carry on with our lives and our interests; they do not restrict us or encourage us to stop or hesitate.

Artistic Play
Such meditations on the limits of language have allowed a new perspective towards my interactions with the disease to emerge for me now, one which does not attempt to disregard or make light of it, but one resolved not to accept settled, 'appropriate,' singular approaches to the experience, such as encapsulated in the frequently heard comment, "I'm so sorry you're going through this." To explain this transformation, I appeal to Kenneth Gergen's concept of serious play and James Carse's of infinite games.
We often think of play as meaning very little or having no real consequence. We contrast it to the serious and important. Thus, playing with disease seems, at least at first, disrespectful of myself and openly disrespectful of others' experiences, particularly those with more severe cases than I. But Gergen (1991) reminds us that play need not be taken lightly, as mere amusement. It can be the site of earnest endeavors, intense concentration, a tremendously influential context for the expression and development of self. Examples of serious play that first come to mind are athletic contests and then dramas in all genres. In fact, some of our most serious endeavors—including politics, marriage, religion, and intellectual life—are regularly conceived as games often without intending any disparagement.
Gergen pushes us to consider a broad conception of play, one that is both serious and non-serious at the same time. Such a conception challenges rigid or narrow constructions of disease experience, opening the patient to the possibilities of renegotiating the forms and meanings of this experience. When such opportunities are held in mind, play expresses a higher regard for the person than the disease. Play represents a higher form of respect than seriousness.
The notion of serious play turns us to Carse (1989), who distinguishes two kinds of games, finite and infinite. Finite games have clear, mutually-accepted rules and outcomes. Examples include, of course, children's board games, athletic contests, lotteries, graduation rankings and political contests. Infinite games, in contrast, invite players to renegotiate the boundaries, meanings and purposes of the game. The purpose in infinite games is not to win but to continue and extend the game. Examples of these games include a variety of cultural forms, including art.
Art genres play with the forms of expression, continually renegotiating how art itself is constructed and what counts as art. Genres tend to work out modes of expression until imagination begins to run dry. Subsequent genres react against previous ones extending the play of art. Art often tries to rub up against the limits of what we can say. It often seeks to say what cannot be said in words. It seeks to create understanding we cannot otherwise reach through didactic means. And perhaps most pertinent to the kind of play I seek, art often seeks to disturb, awaken and thereby enrich everyday experience (Dewey, 1934; Jackson, 1998). Rush (1996) argues that art is a fundamental means of solving problems of understanding and expression. Through art, we pay special attention to the relationships between parts and wholes, reconfiguring, highlighting, disturbing experience as necessary to expand and enrich the understandings which structure our social lives.
What I am suggesting is that it is possible to see multiple sclerosis as presenting us with an infinite game of artistic experience. Immediately I need to quality that statement. When my symptoms intensify, whether as a part of a new exacerbation or the continuation of prior appearances, I first feel a sense of panic. But once controlled, though, a much more positive sensation emerges. I begin to watch myself, fascinated with the change for the difference from expectation is entrancing. When changing, my life-world has an unusual characteristic: I live at a greater distance from my own experience than usual. I watch as I try to touch the tip of the index finger on one hand to that of the other (one of my neurologist's tests). I watch my right leg bounce up and down uncontrollably when positioned at a certain angle. When I reach out for a glass of water, I gaze at my arm, as if not fully my own, suspicious that this may be the time I cannot pick it up, cannot close my fingers around it, will drop the glass, or may not even feel a solid object.
The disease plays on and in my body and I can choose to play with it. The game the disease invites me to play concerns how we create reality. Reality at a fundamental level can change; what it becomes is largely up to us. Consider one experience. One morning shortly after the feeling in my hands changed, when I tried to shave, I cupped my hands under the warm water to splash on my face. But once I did, the water scalded. Was the water hot or was my face overly sensitive, such as my feet often are? Our world is made up of temperatures and the body's understanding of them. What if temperatures were unstable or the body's responses to heat and cold unreliable? The game is to construct and live within a world where temperature was always unknown but dangerous. Could this be a real, and not simply imaginary construction? But for our bodies, this is the world we live in now. The meaning of temperatures 'objectively' measured by thermometers still depends upon the body's reaction. That is the meaning of wind chill and the heat index. Temperature remains constant only when, and only because, our bodies react in predictable and consistent ways. MS makes us wonder 'what if.' What would the world be like if our bodies changed?
The MS game goes on. It changes a great variety of the forms and boundaries of experience, one time centering on what my legs feel, the next changing the hearing in my left ear, and recently playing inside my right hand. Each move offers a new game for the taking. I can alternatively experience the disease as sculpting, or painting or playing music on my body. It sculpts the fingers into stiff appendages--how might I think of them? Cocktail sausages, or small beef sticks might work. I do not, of course, eat my fingers though I do sometimes somewhat absentmindedly nibble on them and have also allowed my infant daughters to do the same. In a sense, then, I do know my fingers as food.
This reflection leads me to contemplate the difference between experiencing from within versus from without. One might then pursue the relative weight of both kinds of knowledge. When do we devalue inner knowledge? Phenomenologists have contended that our culture regularly holds outer knowledge in higher esteem than inner. We tend to find, they assert, outer knowledge more scientific and thus, more trustworthy. Certainly this is the medical perspective. But I am not interested in "getting well" in this case. Rather, I want to play; I want to enjoy the experience. Can I not see my fingers legitimately as small beef sausages and enjoy the experience? Where can I go next if I start here?
Or I can start over. How else can I think of my symptoms, a more appetizing or less culinary image perhaps? The disease paints the skin on my shins and feet with an antiseptic wash but the painting simultaneously 'morphs' into a cacophony of noise. I try to develop the right perspective for hearing (with the torso, not the ear) this musical tone. How does painting change into music? Perhaps that is a misleading question. Are these really two different "things"? Perhaps it is this 'I,' myself, that creates the distinction. The bodily element that underlies all forms of our understanding seems particularly pronounced in artistic expressions. Perhaps with practice, our bodies can understand all painting as a form of music or all music as a form of painting and seeing the connections is a matter of becoming more finely tuned to the understandings of our bodies. What I am attempting here, of course, is not to articulate settled conclusions about the nature of music or painting or the disease but to outline suggestive positions from which we might proceed.
The games I am proposing are certainly quite academic kinds of games and thus not for everyone. I have presented above merely initial fumblings towards creating games, perhaps somewhat akin to the cavemen's initial stirrings towards art on cave walls. I expect these games will be thoroughly transformed and usefully elaborated or scrapped and replaced as others play with me. Whatever games we come up with will require playing with words. Such play will undoubtedly feel as though we are putting experience into words but it will be just as much creating experience as expressing it. We will phrase and rephrase sensations, uncover the new realities each phrasing creates, live through the relationships established by these realities, and test the boundaries created.
To play these games, we must be willing to examine the ways we have constructed our experience and our bodies' roles in these constructions, and bracket these constructions, setting them aside, out of their usual role in our experience. We must be willing to put every understanding of our world in play, ready to be examined as social constructions and transformed. We must ask how our constructions might be different and how we might live together within these new worlds. In many ways such games are localized versions of the academic games that social constructionists are currently engaged in (Gergen, 1994).
I am not trying to win the game, only continue it. My moves in this paper, and in my life, are not conclusive or settled, only next moves from where I am now, moves from which I might proceed. This perspective I am advocating refuses to stick with what is but instead continually launches into what might be, what could be, and what I can only imagine. MS offers the chance for me to play with how we create reality, the critical role our body plays in the creation of our everyday experience, and how could it be otherwise. Indeed, 'offering' is too gentle a verb for the disease throws me into the game without warning and without choice.
All that I just wrote may sound flippant but I mean to play it seriously. This perspective may become more difficult or even impossible to maintain as my disease progresses. Will I continue to play with the disease if I become blind, when I am confined to a wheelchair, or if I cannot use my arms? I do not know but I hope so.

The Diseased Self
The perspective of artistic play towards chronic disease transforms the self who is diseased. Indeed the influence is akin to the influence Dewey saw of art on the self. Dewey wrote, "For the uniquely distinguishing feature of esthetic experience is exactly the fact that no such distinction of self and object exists in it, since it is esthetic in the degree in which organism and environment cooperate to institute an experience in which the two are so fully integrated that each disappears" (1934: 249)
When I was first diagnosed, the disease was other than me. It was an invader who had come into my life uninvited and unwelcome. I remember clearly the first-time a doctor referred to it as my disease. I resisted vigorously. It was not my disease. It was an other that I wanted to have nothing do with. To some extent, it was his disease I was experiencing. Certainly he knew it better than I.
Now I am a sclerotic. I have lived a significant portion of my life to-date with MS, my ever-present partner. Indeed, at this point over one-fourth of my life. I have made decisions, concessions, and accommodations occasionally with the disease pressing on my mind, more often with it gently lingering at the side, but with it always present. The disease has been a constant force on this self I have come to construct.
The self I know is sclerotic. I know no other. I would not be who I am now without the disease. If tomorrow the disease is cured, who would I be? I am not sure I would know what to do. I am not sure I could recognize myself and without that fundamental assurance, how could I project myself forward into the future?
Such reflections about identity are reinforced by what medical knowledge tells us about the disease. Current medical knowledge about MS is in doubt that an invading virus causes the disease. Indeed, what we know is that the immune system behaves erratically and mistakenly kills healthy mylein cells. The symptoms I experience come from my body attacking itself. The disease is no other. My body is both the healthy patient and the illness. I am both disease and self. There is no division between the two. In fact, there are not even two entities here, only one: me.
Earlier I described what I experience in the first stages of an exacerbation: panic followed by fascination. In that discussion, I said I live at a greater distance to my own experience than usual. While I do not experience the undergoings that lead to such fascination as happening to or caused by someone else, yet they are not happening to me quite as personally or as vigorously as they used to. Such distance gives birth to not just a different self, but an entirely different kind of self: a playful one. One able to forget itself in a way not possible when playing a finite game. The self that can forget itself experiences freedom to create and experiment, for the consequences are never settled, never permanent, never disclosing of a solemn essence. Reality at a most basic level is being created and reformed 'in front of my eyes', so to speak, and I am a fundamental participant in this creation. The fun, however, is stunted unless I can find people with whom to share it and a means of doing so.
Imposing this distance, however, does not make the disease an other that I remove from myself. There is no 'other' here, only myself. I am both self and disease though I can nevertheless stand apart from myself. The critical move involves 'intersticing' a distance between my own experience and myself. This move opens the possibility of renewed, flexible and enriching relationships with the disease and others I have been seeking.

The Social Dimension of This Play
But my discussion about self has, perhaps, given this discussion too individual of a flavor. A second key feature of artistic experience is that it is always social. It does not count as art until the receiver sees it as art (Goodman, 1978). In order to construct his or her work, the artist must adopt a social reference point. An artist's concern while constructing a work must be how the observer will see, hear or otherwise experience the piece. According to Dewey (1934), a central function of art is to reconfigure the way we experience not only ourselves, but also others and our world.
The very notion of play invites sociality. I do not want to engage in this game alone. Games are often social and this one should be no exception. We can play this game together not merely by having you listen to me, nor even by you suggesting images, perspectives, and metaphors that I try on, retaining the final say about their accuracy. I need you to be an active player. We shall use the disease to create a mutual space where we both try out and expand understandings. Each of us must retain judgment over the appropriateness of conceptions in capturing not our individual but our mutual experience and productivity for proceeding.
The kind of play I am seeking will certainly require us to find and push up against the boundaries of our worlds but what is essential is that the game provide points from which we can continue to make moves together rather than seek a final, and almost surely individual, determination of a fixed reality. Because we have used our bodies to make the worlds we live within, I inhabit phenomenal worlds that differ significantly from the ones we used to share. A prime task now is to entice others to join me in the construction of a new joint world, a playful world where we keep boundaries and limits fluid and we remain quite conscious of our constructive abilities.
Together we can create common realms for joint exploration and re-creation using elements of our divergent worlds. To create these realms, we must through coordinated actions feel, assume, and enter into common images and mutual perspectives. We produce ideas as in a fencing match: parry, counterparry, anticipation, expectation, denial, surprise. Each move adapts, enriches, extends or challenges the previous one, thereby improving our own fit to one another and within this created world. If we accept the invitation chronic disease presents we not only change the way we experience the everyday world, we transform ourselves and broaden the range of relationships with others open to us.
Let me may say a word about the relationship with my wife, a topic not common fare in academic studies but certainly of relevance here. Together we are learning to play. Perhaps the development of play around disease goes through a series of stages. If an initial stage consists of joking, we have very comfortably reached this stage. With her, I can frequently call myself a "spaz" when I trip or say "Yeah, right in your dreams" when a pathway leads to a steep flight of stairs. We laughed together after a telephone solicitor informed us that we had won a prize especially selected for us: dance lessons. When she pushes me in my wheelchair and someone asks her "Can he walk?", she sometimes replies "No, but he can talk." We seek, however, to go further. As I have tried to indicate, play can embrace the serious as well as the light-hearted. The imperative to care which I know constantly informs my wife's perspective may, as I have indicated earlier, complicate our ability to go further together into this play perspective. Perhaps our selves have become so intertwined -- I in her and she in me -- that the meaning of certain possibilities cannot be fully explored. They simply feel too dangerous. In certain respects the play perspective may be easier to attain with someone that offers more distance to myself. Yet, I may be wrong for the possibilities and rewards that have come through our marriage continue to surprise me.
I was mistaken in first taking the challenge MS offers as one of finding the "right" metaphor to depict the experience. That is a hopeless task that pushes one further and further into isolation. The challenge is not to identify a single true reality. Rather the challenge is to find artistic modes of expression that create new realities which in turn extend and enrich relationships. Changes in bodily experiences would present game-like challenges to each understanding and require new moves on our part. The game offers new selves for me to be, new selves for you to become and new ways for us to relate to one another.

Moral Considerations and the Respect for Life
Emphasizing this game as a social rather than individual affair, however, presents special difficulties, particularly for the others that I hope will join me. Generally, others may feel that by virtue of a special moral sanction, I and other chronically ill individuals can do what they cannot. For us to adopt this perspective is less repugnant than for them to do so. By accepting a playful perspective, they would, they often feel, be participating in practices that do not take our lives seriously. They may be encouraging us in practices that may lead to earlier and more complete disability than if we had resisted. Can they accept themselves if they do? Even if we give them permission to play with us and invite them to do so, the moral restraints will continue to weigh heavily upon them.
But such a view confuses quality of life with extension. Some of the moral qualms generated by this perspective come from the apparent trade-off of length of life for quality of life. Will I live as long by not fighting the disease as I would if I did fight it? Included in what we mean by fighting a disease is to follow physicians' directions and take medicine regularly. I do take these actions and precautions so that possibility cannot form the basis of this question. Have I given in or given up? The question inquires into the effects of psychological disengagement. I learned through a long athletic career that, even when performing all the desired actions, diminishing the desire to win, refusing to actively resist, opening the possibility for defeat, or turning attention to other phenomena besides the competition itself can be enough to throw the contest to the other side. As coaches would say, such actions take the edge off a competitor and throw the outcome in a competition only determined by an edge. Will turning my attention away from actively resisting the disease shorten my life? I do not know. Perhaps.
Such a possibility, however, does not compel my attention. Other qualities of life besides duration concern me, and this choice provides the sticky moral ground of the perspective I have been developing for myself, and the reason why I cannot push it upon anyone else. We often praise individuals for their heroic struggles against disease. We have come to see struggling for extended length of life as a moral virtue but does this mean that we see a refusal to struggle as less than virtuous, or worse? As giving up? This alternative playful perspective sees quality of life, defined in terms of enriching relationships of value, growth of understanding, and extension of self into others, as preferable to simply extending life in any form. This perspective does not come from a refusal to take the measures necessary to keep my life going; rather it evolves from not giving those measures highest priority, resisting the mandate to see my life as one of struggle, choosing to spend the attentional energies required for active resistance elsewhere, and recoiling from taking life as a solemn and inviolate affair.

Concluding Remarks
I began this investigation with three questions, "Is it possible to experience a chronic disease as one that offers advantages as well as limitations, what would such a transformation in our thinking take, and what can such experience tell us about our relationships with each other?" Let me summarize what we found to answer each of these questions in the order above.
The answer to the first question is a qualified yes. With a change in perspective, it is possible to see the disease as offering advantages that might enrich our understanding of experience and ourselves. Perhaps these "advantages" are better identified as a series of challenges. So far, at least at times, I am able to take my disease as inviting me to play with how we recognize and understand reality. Without the disease, it is unlikely I would be as ready to play or be as insightful in contesting the boundaries of our reality.
The answer to the second question qualifies the answer to the first question for among the conditions for realizing the advantages of the disease are the social conditions of such recognition. I cannot play for long alone. By myself, the play is stilted and does not get very far. Realizing the possibilities offered by disease requires, as I mentioned, a change in vision. But such a change can only be effected through social, not individual, efforts and these efforts require mutual rethinking and re-inscribing our moral understandings. The moral understandings that prohibit playing are extremely difficult to get beyond. They can paralyze us. Somehow others and I must find ways around the limits of our engagement to make such play a truly joint activity that is both insightful and generative for both of us.
And in the answer above lies a beginning answer to our third question, what we can learn about our relationships with one another. We are reminded once again that fundamentally, we are social animals. We live through social processes and experiences, never through individual or isolated efforts even when we think we are doing so. The play outlook establishes relationships unlike, of course, serious realistic ones, but also unlike steadfasly caring ones. And yet, at the same time, a true play perspective embraces both of those and numerous others. My response to this question can only be an initial foray. Until we find ways of playing together we will not be able to extend the lessons chronic disease offers us concerning our social natures.
Until we can develop joint forms of the kind of play outlined here, my success at holding on to the playful perspective I have outlined here will never be more than partial. During those times when the disease is progressing, the reactions of alarm, depression and worry may continue to prevail. At such times, I become concerned with myself, withdrawing from others. I expect caring from others to come in the form of empathy and concern. I am not able to play. I certainly am not admonishing others for having these reactions as well.
I am learning to expect those reactions and wait with a certain element of patience for the opportunity to play again. Once again caring can be expressed in the form of play. Others have written about living with MS for 20 years or more. As of 1998, I have lived with it for at least twelve years. How will I view the disease in years to come? I do not know. Will the disease take away my sight, my ability to walk completely, my ability to talk? Perhaps. Could I continue to play with the disease then? I hope so. Will I be able to bring others into this play? I am certainly committed to trying.
Like Maxine Greene, whose epigraph opened this article, I do not want to grow accustomed to a dry, little, life and indeed even with a chronic disease, the difference is up to me. No, it is up to us.

____________________________
I would like to extend my sincere appreciation to the British Sociological Association for allowing me to present a first draft of this paper, Cherie Buell for helping to type this manuscript, Darlene Buell for her essential assistance and my wife, Clar Pillsbury, for carefully reading and commenting on it. Their efforts have helped me more than they know.

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