Disrupted Bodies: Experiencing the Newly Limited Body in Stroke

Christopher Faircloth
North FloridaSouth Georgia V.A. Medical Center

Craig Boylstein
North FloridaSouth Georgia V.A. Medical Center

Maude Rittman
North FloridaSouth Georgia V.A. Medical Center

Mary Ellen Young

University of Florida

This article explores the intersection of recovery and bodily practices among stroke survivors. Drawing on the extensive literature on the socially constructedbodyingeneral,onchronicillness,andoninteractionistthought, we explore bodily experience as a mechanism that informs stroke survivors understanding and practices of everyday life in recovery. We ask a central question: what practical mechanisms does the survivor employ to provide meaning to her or his newly disrupted body? Data gathered from in-depth interviews with fty-one discharged stroke survivors show that they use three specic technologies of bodily management and meaningmaking. These are managing the body within a mind-body dualism, testing the body in its everyday practices, and orienting to the body as a biographically informed phenomenon.

Research into the body as a social construct has recently emerged as one of the most dynamic areas of research in philosophy and the social sciences and is one of the most debated topics in the social sciences today. The amount of literature on the body has greatly increased in recent years. Scholars such as Judith Butler, Bryan Turner, Mike Featherstone, and Margaret Lock have emerged at the forefront of this new theoretical concern. As Hughes (2000:13) notes, the body in sociology is
Direct all correspondence to Christopher Faircloth, Rehabilitation Outcomes Research Center (RORC 151), North FloridaSouth Georgia V.A. Medical Center, Gainesville, FL 32608; e-mail: christopher.faircloth@ med.va.gov. Symbolic Interaction, Volume 27, Number 1, pages 7187, ISSN 0195-6086; online ISSN 1533-8665. 2004 by the Society for the Study of Symbolic Interaction. All rights reserved. Send requests for permission to reprint to: Rights and Permissions, University of California Press, Journals Division, 2000 Center St., Ste. 303, Berkeley, CA 94704-1223.

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highly contested. . . . [S]ociology can deal with all sorts of bodies, largely because it relates to them primarily as either the source or the outcome of meaning. And Williams and Bendelow (1998:1) state, [R]ecent years have witnessed a veritable explosion of interest in the body within social theory[,] . . . from the reexive body of late modernity to post-structuralist celebration of the body. We have explored such concerns as the body as a passive, immobile object (Foucault 1977), the bodys role as a civilizing presence (Elias 1978), the bodys own government (Turner 1996), and the bodys lived experience (Nettleton and Watson 1998). But these are only a few of the seemingly endless areas of body theorizing in the social sciences. Three prominent studies pinpoint the importance of selfbody relations in interactionist thought. Saltonstalls (1993) study of the lived health experience examines the concept of health as embedded in a web of gendered body-self relations and the accomplishment of health through everyday practices. She concludes that healthy selves gain meaning via bodily activity. Waskul (2002; Waskul and van der Riet 2002) studies the lived body as a social symbolic activity. In his study of televideo cybersex, Waskul (2002) notes that regardless of the social setting, the body is both an experienced subject and an acted-upon object. It is not simply an object that exists in the world but a source of continually negotiated meaning through an ongoing dialogue between individual and society. Waskul and van der Riet (2002) extend sociological scholarship on the body into the study of chronic illness through the lived experience of cancer patients. Like other chronic illnesses, cancer forces patients to reposition the precarious body in their perceptions of self and interaction. While the body is always an ongoing concern, it assumes a central position in the continual processes of meaning-making and identity (re-)formation among those who suffer from chronic illness. Other chronic illness studies in medical sociology (see Charmaz 1995; Corbin and Strauss 1987; Frank 1995; Kelly and Field 1996; Lupton 1994; Zola 1991) also highlight the insight that the body is an unnished entity (Shilling 1993)an insight that research into illnesses as diverse as HIV/AIDS (Chapman 2000; Gillman 1995), eating disorders (Grove, Kelly, and Liu 1997), osteoarthritis (Sanders, Donovan, and Dieppe 2002), TMJ (Garro 1994), and multiple sclerosis (Monks and Frankenberg 1995) seems to substantiate. The unnished, poststroke body has begun to gure in work concerned with the body as a physiological and cultural construct, both in theory and in everyday practices, since, as a sudden disruption, or biographical disruption, as Bury (1982) puts it, stroke directly affects the prestroke, functioning body. Recent efforts by Doolittle (1992, 1994) and Ellis-Hill, Payne, and Ward (2000), among others, point to the signicance of the body and self-body interaction in stroke recovery. Our aim in this article is to advance this nascent exploration into stroke recovery as it intersects with bodily practices. Specically, we wish to explore how bodily experience informs stroke patients understandings and everyday recovery practices (Becker 1997). In answer to the question we pose herehow do survivors give meaning to the disrupted body?we suggest that stroke survivors employ

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three distinct techniques of bodily management and meaning-making: (1) approaching the body within a mind-body dualism as a subjective/objective phenomenon, (2) testing the body as everyday practices, and (3) treating the body as a biographically informed phenomenon. We focus on this last orientation in terms of Gubrium and Holsteins (1997) analytic vocabulary of biographical work. The methodological concept of biographical work alerts us to the artful construction of lived experience within the practical concerns of discursive environments by stressing the hows of storytelling that assemble personal experiences through time (Gubrium and Holstein 1997:156). By using this approach, we depart somewhat from Burys (1982) and others depictions of chronic illness as a biographical disruption, studying instead the several models of patterned recovery progressions that are developed by stroke survivors. Biographical work indicates that, rather than one universal pattern (e.g., disruption), stroke survivors are capable of constructing exible, sometimes freshly innovative accounts of who and what they are. The concept of biographical disruption further alerts us to the fact that such artful constructions are ongoing and subject to change depending on the practical concerns immediately at hand.

EXPERIENCING STROKES: A REVIEW OF THE LITERATURE

Gay Becker and Sharon R. Kaufman (1986) pioneered the qualitative investigation of stroke recovery, and their work continues to dominate social scientic research on this topic. For example, Becker and Kaufman (1986) and Kaufman (1994) studied the everyday practice of stroke construction and recovery as a subjective experience, from the perspective of both the patient and the health care professional. Their research set the stage for increased attention to the chronic conditions of stroke recovery and framed most interactionist work on this topic. Here, we provide a brief review of their research to establish a working foundation for the stroke recovery experience. Noting that long-term health care for stroke is on the periphery of the American medical system, Kaufman and Becker (1986:984) argued that providers who work with stroke patients must adapt their rehabilitation goals to a health care system that de-emphasizes and de-values rehabilitation and that stroke patients wants and needs must be merged in an existing health care system that often denies them the range of services they require. These conditions directly shape the stroke recovery trajectory and the long-standing impact of the stroke on a survivors daily existence. Using the same data gathered from rehabilitation therapists and patients, Becker (1994) suggests that the therapists often associate the consequences of age with the effects of stroke. As we discuss below, this direct association also has a signicant impact on the survivors subjective understanding of stroke and its inuence on the body and biography. Merging the perspectives of patients and professionals, Becker and Kaufman (1995) turn to the very mechanisms through which a stroke recovery trajectory is undertaken, and in turn managed, by all concerned. It is certainly not surprising

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that like most other illnesses, stroke does not t into a longitudinal, step model such as that outlined by Kubler-Ross in her research on death, but unfolds with much more uncertainty. Becker and Kaufman present us with three different models of the expected illness recovery trajectorythat of survivors, family members, and physicians. Not surprisingly, each has a much different view of recovery and how it is accomplished. In a number of articles, Kaufman also focuses on the phenomenological meanings of stroke and recovery for the survivor. Developing a case study with one respondent of their larger study sample, Kaufman (1988) discusses the extensive biographical work a stroke patient must accomplish. As we have found in our own research as well, Kaufman reports that the way ill persons come to terms with loss or change will greatly determine the meanings they give to their illness (p. 218). As her work also illustrates, the meaning of stroke and its resulting bodily disruption is not an objective, predetermined condition in the survivors life but emerges out of the survivors everyday recovery practices and performances.

METHOD AND DATA

To better understand the stroke recovery experience, we relied on observations already collected from an ongoing, multisite project that uses both qualitative and quantitative data. The qualitative component we present here is grounded in in-depth interviews with fty-one Hispanic, African American, and non-Hispanic white stroke survivors one month after their discharge, and in limited observations in their homes. We selected participants for this study from a pool of stroke survivors who had been discharged from the hospital to their homes in four locations in Florida and in Puerto Rico, where more than 150,000 Hispanic veterans live. Our interview asked informants about their daily lives, their lives before and after stroke, their personal management in public settings, their constructions of stroke and body, the meaning they attach to a life with illness, their ethnocultural understandings, and their sense of the future. We encouraged survivors to elaborate on their understandings of recovery in great depth. Since the Department of Veterans Affairs funds the present research, we limited the subject pool to veterans from each ethnic group who participate in the Veterans Affairs (VA) health care system in these locations. Because of these limitations, most of those in our sample are men. Although this bias might raise concerns about generalizability, we nd that the kinds of experiential concerns and recovery processes identied here closely reproduce ndings identied by other qualitative researchers who have collected information with much different groups (see Doolittle 1992).

THE BODY AS OBJECTIVE AND SUBJECTIVE PHENOMENON

Doolittle (1992:122) notes that after a stroke, the body became very objectied; the affected limbs were treated as objects to be manipulated. Ellis-Hill, Payne, and Wards (2002:728) work on stroke recovery described the same process: the body,

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separated from the self, takes on the nature of an object. Moreover, Doolittles informants reported that their affected limbs talked back to them and that this continuous conversation between the mechanized body, on the one hand, and the organic body and mind, on the other, was the dominant strategy they used to manage the poststroke body. These ndings echo Waskuls (2002) approach to the body as both a passive object and an active subject. Like Doolittles informants, the stroke survivors we interviewed told us they engaged in extensive body talk. In other words, they also talked to their bodies and in turn listened to their bodies, especially their nonfunctioning limbs, as if they were entities separate from themselves, objects to be trained and mastered. This dialogue illustrates what Foucault (1988) termed techniques of bodily management. As Doolittle notes, after the stroke, subjects were confronted with limbs that no longer functioned as they once had, forcing them to accept that what was once taken-for-granted had now become problematic. Thus the stroke survivors engaged in self-communication with their affected body parts, encouraging them to adequately perform their tasks. Our informants often spoke to the body as an organic whole and not solely as the mechanized body that is so prominent in Doolittles study. In short, there are two types of body functioning. It is not simply the arm or other limbs that fail to perform, or the effects of aphasia, or the left side no longer functioning smoothly (i.e., the body-in-parts) but rather the body-asa-whole that is no longer working as it did before the stroke. This body talk resonates with the traditional philosophical mind-body dualism (Williams 1996) that, while traceable to the work of Plato, Hume, Hegel, and Kant, was most explicitly elaborated in Descartess Meditations (1901). In his article The Absent BodyA Gerontological Paradox (1996), the gerontologist Peter berg alerts us to the inuence notions of mind-body dualism have in social theory, suggesting that academics have constructed an ontological dualism between mind and body that grants preeminence to the mind as a controlling agent. In constructing and embracing this dualism, philosophers and theorists have walked a tightrope between a focus on the body and a focus on the mind, often neglecting the body as an active subject capable of exerting its own demands. It is in the comings and goings of everyday life that the body responds, either in ways that are nonproblematic to ones self or in ways that force the self to reformulate its meaning.

The Body as a Passive, Foreign Object

In the construction of the body as a passive, foreign object, individuals understand and perceive the lived body as an entity that is administered by commands originating in the brain. The mind is telling the bodywhich does not listenwhat to do. In the poststroke narratives presented in this section, survivors experience the body as deaf to their commands. For example, at his one-month postdischarge interview, Eric, a seventy-ve-year-old African American stroke survivor, spoke candidly of his newly observed problematic poststroke body. He is having bowel

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problems and difculty urinating and is moving very slowly. Eric nds this lack of mobility very troubling and discussed it at length during the interview. He states that his mind can no longer tell his body what to do. He embeds his narrative of bodily limitations in a discourse of mind-body interaction and a specicand seemingly benignlife activity. Interestingly, and in line with much current thought on the relationship among chronic illness, the body, and self, Eric directly communicates that the workable body is what determines the self, or in his own words, the body is what forms the person: My body cant do what it used to. My mind tells me I can, but my body tells me I cant and thats what makes people. I aint able to pick up that car and change your tire. Thats the way it is. In his twelve-month postdischarge interview, Eric still expresses great distress over his body. It is not responding well to treatment, and he is concerned that he will be left with a failed body for the rest of his life. Though not in the throes of depression, his concern is apparent:
Well, whatever is goin to be is goin to be. Im gonna go along with it. Im not against it. I goes right along. Well, its our mind. My mind tell me I can do it and Ill go and try to do it to a certain extent. But you might as well back off if it is more than you can handle. I dont want to push it to cooperate unless I have to, cause Im trying to get better to build this body back to where, you know, Ive generally been livin.

Eric indicates that although he might not improve in the future, all he can do is go along. As a very religious person, Eric frequently bolsters his acceptance of his bodys limitations by referring to a spiritual preordainment. As he goes right along, he is attempting to get his mind to better direct his body to accomplish daily tasks and prescribed activities; but if the body cannot do it, he will back off of it. The mind is alert, but the body does not follow. It does not listen to his minds clear commands. Though he is not improving, Eric is still optimistic and trying to get his body back to where it has generally been livin. Peter, age fty-two, provides us with another example of the objectied body. Peter lives in a clean, well-kept apartment in an urban area. At home, Peter has a number of assistive devices, including a walker and the two canes he depends on to take walks, which he continues to do on a regular, even daily basis. After a brief conversation concerning these devices and the assistance he requires, such as that from his wife, his principal caregiver, Peter turns to his body and its inability to respond to his mental commands. The body, he notes, does not help his mind. If he truly wants his body to function, all his mental energy must be focused on invoking his bodys tacit mechanical capacity to animate itself as an organic entity: Well, at this time my body is not following what my mind dictates. What I want to do, my body does not help me. In many occasions I have to concentrate for it to function so I can do what my mind wants to do. Finally, Sam, who has severe left body numbness and overall left body weakness, speaks of the body as an entity that is somewhat different from the way Eric and Peter view it. In contrast to Erics and Peters organic body, Sam talks of a

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mechanized body, separated into parts. In Sams case, it is his hand that no longer functions as expected. The medical advice he received instructed him to communicate closely with his hand, to provide it with the necessary information to function adequately.
I drop things out of my hand. The doctor told me that what I have to do is tell my mind to tell me to hold something in my hand. If I hold it too long I forget all about it and it fall out of my hand. And he told me that you had to keep sayin to yourself that you got something in your hand. In other words, keep telling yourself if you got something in your left hand.

The Body as an Active, Familiar Subject

Our informants also depicted the body as an active, familiar subject capable of expressing its own thoughts and communicating directly to its owners mind. In this view, in short, the body can talk back. In contrast to both the historically driven mind-body dualism and the narrative extracts presented above, in everyday experience the body is at times in control of the mind: the soma controls the psyche. While remaining a unidirectional mind-body dualism, it is the lived body that now manages the lived mind. Rather than a passive, foreign object, the body becomes the active, familiar subject. Asked about what he misses about his prestroke activities, Tom, an eighty-year-old survivor, reports a global concern with his body, specically, with his organs and the side effects of the medications he has been prescribed. Tom now nds himself focusing much more closely on his body and listening to what it tells him. He concluded the interview by telling us how close he now felt to an entity he rarely experienced before.
Right. I focus on my body now since I had [the stroke]. Ive listened to my body more now than I had since Ive had the stroke. Im listening to it. Prior to the stroke I would listen to my body, but I, now Im in-depth with the listening. Listening to the body, ya know?

John, an active fty-six-year-old survivor, reads his Bible daily, exercises, talks to his family and friends, and monitors his body closely. Though he is physically t, his stroke has had a direct impact on some of his activities. This is very important to John, who describes his body as making demands that he obeys:
My body tell me, say, Get up on and get up like you used to and go to walk. I cant do that now. I just cant get up like I used to. I just got to sit there. You know, for a while my body tell me, it say, You just sit there for 5 to 10 minutes. And then you get up. Then itll say, Get up! And I get right on up, you know?

Toms and Johns experiences illustrate how the body can talk back to the self. Here, it is the self that is listening to the body, with the nal step in this mind-body relationship being a transformation of the lived self through the process of selfreection. In other words, the body talks back, but the meaning of this talk is derived from self-interpretation. Once the self interprets the newly emerging body

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talk, a new self emerges in the biographical work of the stroke survivor. This newly emerging self represents a new self-body relationship wherein the former mindbody dualism no longer operates. In this situation, the persons biography becomes a self-body conversationa process we discuss more fully below.

Testing the Body in Everyday Practice

To gain a working understanding of the body, stroke survivors will test the limits of what the new body can and cannot do. They will push the body and establish the point at which it can no longer perform tasks that it easily could before the stroke. Becker (1993:153; emphasis added) points this out eloquently: Searching for and developing markers of continuity with ones former life was a wrenching experience that often resulted in feelings of defeat. Study participants attempted tasks that were beyond the limits of what they could do. This testing of the body is a common practice among individuals suffering from a chronic illness or a disability. The stroke survivor becomes immersed in both existential and experiential expressions of bodily disruption and must make the conscious commitment to participate in meaningful activities. Doolittle (1992) explores this mechanism among stroke survivors, noting that they regularly engaged in testing and experimentation of the poststroke body, and sought to test their abilities, to encourage risk-taking endeavors. In so doing, experimentation allowed assessment and recognition of capacities and possibilities (p. 123). This pushing of bodily limitations is critical to an actors ability to adapt to the new body, to assess recovery, and to recognize progress. By accomplishing tasks that they once accomplished with ease, stroke survivors can remain optimistic. Testing the body is a vital part of any stroke recovery and sets benchmarks by which survivors can measure progress. The newly perplexing body is a judged body, a precarious and fragile entity with which working relations must be maintained (Gadow 1982). How far can one push this newfound entity, however, remains an open questionto the analyst and the stroke survivor alike. The respondents in this study offer many different views on exactly how far they can push the body. Eric discusses what he can and cannot do with his body in terms of his familya frame of reference he mentioned frequently throughout his interview. While trying to play with his grandchildren soon after his discharge, he soon realized that his poststroke body could not maintain this previously routine level of physical activity.
Eric: So I rather just not let them do a lot of things gonna make me sore. I say, I dont want them jumping on me and its, anyway, you know, they touch you and it go sore. So, clean through your body. Anyway, they touch me and that comes all the way through. The soreness. And thats why I stay quiet, cause theres a bad feeling when you get sore. You cant move when you get sore. Interviewer: Now that youve talked about the things that make you sore, you know not to do those things?

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Eric: I dont do those things anymore. I stay off of it. And I dont let the kids, my grandchildren, jump on me anymore.

Later in the interview, Eric returned to a discussion of the bodily limitations he now experiences. He spoke of how important it is for him to recognize what he can do as sort of experiential bodily victory:
Thatll make me sore. Like riding in a car for a piece. It doesnt bother me, but there are certain things I do around here will make me sore and I know one of them is really . . . it was kids jumping on me. I say thats not good. I dont let em jump on me anymore. I had em here for Christmas and, oh my God, I kept getting sore and I said, whats this? But it lasted two or three days.

Franklin, a sixty-six-year-old African American veteran, also comments on the purposeful action he took after his stroke to see just what his body could accomplish in terms of the basic activities of daily living. This test led Franklin to nd there are certain tasks he can undertake and others he should not attempt. He seems quite at ease with this.
Well, uh, thats me. I try things. You know, I nd out if I can do it or cant do it. Then I leave it alone. You know? I either, you know, its sort of therapy with myself, you understand? If I can do it, I go ahead and do it. If I cant, I back off.

Though Franklin has had a somewhat positive experience in learning how to adapt to his illness, this is certainly not always the case. Sometimes nding out what one can and cannot do can be a depressing experience. Indeed, the stroke survivor will often continually search out new activities in order to regain the positive sense of a preillness self. Gavin, a seventy-ve-year-old African American with severe left-side weakness, illustrates this well. His past failures at accomplishing previously routine tasks have worn him out, and he nds himself at a crossroads, wondering whether he should push onward or try to reconcile himself with the body he has become.
Well, Im still having some problems. I dont think, I dont know if it is a result of this stroke or what. But I think, ah, I think that it mainly dwells on the fact that Im not doing, able to do what I used to do. And I nd myself debating should I try this? Should I try to do that? And if I do this, how would I injure myself? I often nd myself questioning myself, should I, would I, could I? You know, and sometimes I nd myself doing nothing because those questions are difcult to answer for me.

Gavins comments illustrate Yoshidas (1993) concept of identity pendular reconstruction wherein the nondisabled and disabled aspects of self swing back and forth like a pendulum. As Gavin eloquently states, he questions himself about listening to what his body is currently telling him. After listening to his body, Gavin now begins a process of testing, but this testing is not simply a physical endeavor. As he tests his body, he also tests his self, ultimately discovering who and what he is in his current everyday life-world. The body as a passive object and the body as a familiar subject confront one another in the process of self-reection. Pablo, a fty-six-year-old Hispanic, has had to adjust his concept of time, an experience he believes results from his chronic illness (see Charmaz 1991). He nds

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himself having to accept performing his activities more slowly than before. Importantly, he has not given up performing tasks he previously was capable of but has worked to adjust to the time they now require. As the quote below indicates, he has managed quite successfully.
Like if I go out there to work on the yard and I have to come inside, you know, in a shorter time than before. And some time I used to work out there for four hours straight. Now I probably can work half an hour and I have to go inside to cool off a little bit and drink some water. And I like pushing the lawn mower. I havent done it yet because of the limp in my leg. It might be a little more, a bit more difcult, but I dont think Im limited to where I cant do it. I think I can do it. I am gonna get me a lawn mower where its self-propelled. I have a push mower and Im gonna get a self-propelled mower. That way, it will be a lot easier for me to help with the pushing.

Last, some stroke survivors tackle their limitations with a vengeance, interrogating their bodies for what they can accomplish by testing their limitsan often frustrating process. Steve, a seventy-ve-year-old white veteran, speaks of this choice in great detail:
I do what I can. I dont say I cant do nothing. Ill, Ill try or attempt it and then, Ill get frustrated and cuss a little bit and . . . if I decide Im going to do something, Im going to do it. Its like now. If I decide to take the car and go somewhere, I take it and go. Whether she [his caregiver] likes it or not. If I decide Im going to do it I do it.

CREATING COHERENCE IN THE BIOGRAPHICAL BODY

In 1982, Michael Bury published Chronic Illness as Biographical Disruption, now widely recognized as a seminal work on the experience of chronic illness. His argument presents chronic illness as an event that disrupts the ongoing biography of a person, or, as Giddens (1979) terms it, a critical situation in which structures of everyday life and existence are radically disrupted by newly found pain and suffering. Corbin and Straus (1987) term the work that we perform to offset this disruption a biographical accommodation. The onset of a chronic condition unsettles a persons knowledge and experience of the body, thereby disrupting not only his or her understanding of the body but also of specic body parts and systems. This disruption is embedded in a temporal dimension that directly shapes peoples responses to these bodily changes. As Becker (1997:39) notes in Disrupted Lives, Both past experiencesincluding illnesses, life transitions, and other major eventsand expectations for the future inform current experiences of health and illness. People experience illness and impairment from a perspective determined by their historically situated and contextually informed bodies. Our approach here extends Burys arguments by focusing on the very interpretive mechanisms, or techniques, stroke survivors use to attribute meaning and create coherence for a disrupted body in the context of an ongoing biographypast,

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present, and future. Gubrium and Holsteins (1997) concept of biographical work provides an analytic vocabulary for this approach. From their perspective, a life, its achievements, failures, and successes, is an interpretive accomplishment, created, sustained, and transformed through social interaction (Gubrium and Holstein 1997:156). Thus, the construction of a life history, or biography, is not simply an artful accomplishment but is also mediated by discursive environments and life events that the biographical agent nds important. In other words, we orient our biography construction to practical considerations, and the artfulness of life creation is embedded in the meanings we attribute to our individual experience as we seek to create biographical coherence. As Gubrium and Holstein (1997:157) note, biographical work is far from automatic; it is practical and capable of yielding elastic, even novel, formulations. We are interested here in how people assign meanings to the recent bodily disruption of a stroke by drawing on available discourses. What do they dene as important after having survived a stroke? There are certainly various ways that individuals can give coherence to life and this climactic event. However, all will, in distinctive ways, draw on discursive resources to construct this life-changing event in the context of their individual lives, shaping a coherent biography. Their respective stories unfold within these discursive horizons. For example, in an article examining the effects of osteoarthritis on pain and biographical disruption, Sanders, Donovan, and Dieppe (2002) suggest that age functions as an important discursive resource in narratives of disease. They nd that persons with osteoarthritis construct stories of normality in which they acknowledge age as a casual factor in their arthritis. These elders draw on common cultural images in their constructions of these narratives and perceive arthritis as being synonymous with old age, and the imagery associated with older people as being crippled (Sanders, Donovan, and Dieppe 2002:237). They reported a sense and acceptance of their illness in the context of their identities as elders. While they most frequently used negative images as resources, they also used these images to construct arthritis as a normal part of aging. We found this use of age as a discursive resource quite common among the stroke victims we studied as well. For example, Derek, the seventy-one-year-old with severe weakness in his left side, discusses his stroke in the context of aging and insists he performs the same amount of labor that he would at this point in his life anyway. His activity, in other words, is normal for a man his agea theme that, like many of our informants, he embeds in a lifetime of manual labor.
Interviewer: Are there things that you would like to do that you no longer do because it is stressful? Derek: Well, Im probably doing about what a fella my age ought to be doing anyway, really. Ah, youre always thinking in your mind that you can do the things you used to do when you were thirty, but I know good and well thats not right. So I dont try em. [Laughs] Interviewer: Like, are there any, anything in particular that youre thinking?

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Derek: Well, theres lots of things Id like to do that I used to do. Ive built houses and all those kind of things, but I dont do that no more. I know I cant do it so I dont even attempt it. Interviewer: Like construction work and stuff like that? Derek: Yeah, yeah. I used to do that when I was a young fella. Interviewer: Did you have fun doing that? Derek: Oh yeah, I enjoyed it. But now I just think about it. Age, I guess.

Kyle also evokes this same discourse of aging and normality. Concerned with the time it now takes him to complete activities, Kyle organizes his narrative around aging and its causal relationship to slowing down ones activities. He suggests that this is normal, with or without the stroke.
But the most important thing is that Im not going to fool myself in thinking that Im going to be just as good as I was in the past. Because I realize that as I get older my reaction time is going to be slower. The things I used to do I dont do anymore. The places I used to go that I dont go anymore. You know its just that. Thats it. One of my friends who just died even wrote a song called The Things I Use to Do I Dont Do Anymore. And its just beautiful.

It was common for the men to discuss their stroke and its impact on cognitive and physical activities. Perhaps because of the age cohort they belong to, the respondents felt that work was an important self-dening mechanism. It was a resource they use to dene the stroke as a disruptive event in the context of their lives as workers of some sort. That their bodies represent the body-that-can-no-longer-work can also be heard in the account of Seth, fty-seven, as he describes his stroke, its effect on his daily life, and its relationship to his prestroke level of productivity.
The most change is that I do less than what I have done before. Just the bottom has dropped out of what I did before. My wife had commented the other night that I used to get calls. I get calls worse than a doctor. I get calls two oclock in the morning. You know, when somethings gone wrong with the hotel. Some emergency at the hotel. Usually its a water leak or something, but just recently, its been like a month, almost a month, maybe ve weeks, that they have just started calling me again. Thats ne, I guess. I like what Im doing. I take care of emergencies, and it gives me a sense of worth.

Some survivors describe themselves explicitly in terms of the physical activities they could undertake before their bodies were altered and after. In some cases, exercises such as jogging or lifting weights, serve as benchmarks of the new body and its relationship to an ongoing biography. Asked about his typical days, Thomas, age sixty-eight, constructs a story based on his friendship with the neighborhood children and its importance to him. Central to this story is the enduring centrality of exercise, walking in particular. As he says, Oh, I gotta walk. In the excerpt below, Thomas introduces his discussion of walking with an assistive device with a statement that depicts a future biography in which he can no longer walk.
Thomas: Course I aint gonna bring it in the house. Ill leave it out there where I can use it. Im going to try and walk as long as I can. As

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Interviewer: Thomas:

Interviewer: Thomas: Interviewer: Thomas: Interviewer: Thomas:

long as I can walk, Im gonna walk. When it gets so I cant, then Ill use a cart and a wheelchair. I got a wheelchair back there. Is walking important to you? Oh, I gotta walk. Hell. Ive, up til now, in October before this happened, I was walking four and ve, six, seven miles a day. All in that sand. Id have every kid in the country around here following me. Well got out there and walk, us kids. If you asked where I was, theyd tell ya. Theyd show you exactly where I was and what I was doing. These kids would. Did you like doing that? Oh yeah, yeah. You gotta. Walk six, seven miles a day with kids, you better like it. How often did you do it? Every day. Five, six, seven days a week. Now you cant do it anymore? I walk out the door out on the front porch and Im give out.

CONCLUSION
As an attack on the mind that affects the proper functioning of the body, stroke provides us with a useful terrain on which to examine the mind-body dualism. Our basic argument places embodied experience front and center (Williams 1996) and focuses on three specic mechanisms that stroke survivors use to make sense of their newly disrupted bodies: orienting to the body as a subjective/objective phenomenon through a mind/body separation, everyday testing of the physical and psychological capabilities of the poststroke body, and treating the body as a biographically informed entity. These everyday practices inform us about the subjective experience of illness and the coping mechanisms survivors employ to adapt to the embodied nature of the illness. Indeed, research on physical therapy among stroke survivors has noted that patients are taught to orient to the body in this way (Ellis-Hill, Payne, and Ward 2000). Mind directing body becomes a central strategy whereby survivors gain control and assemble a workable denition of their embodied selves. Traditionally, approaches to the problems of stroke recovery have followed a mind over matter logic. As our data indicate, however, the matter acts as a subjective entity in its own right, speaking in its own voice. Stroke, an extraordinary event that occurs in the body, is a specic embodied experience that transforms the self. Similar to Olesens (1992) analysis of peoples experience after a major earthquake, the sudden threatening experience of having a stroke upsets the familiar, taken-for-granted environment the individual lives in, and the subsequent reexive process between body and self transforms the survivors ongoing biography. Our data show that stroke survivors reect on their experience and produce a now vulnerable, mortal self (Olesen 1992). In particular, if the aftereffects of the stroke are severe, the vulnerable self will often overwhelm other self-conceptions. In essence, the stroke becomes the reective symbol survivors use in describing an unpredictable life-world. Stroke survivors inform us that they can

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only take life day-by-day. Plans for the future become vague and indeterminable. Today is all that can be planned for; tomorrow remains a distant hope. The body becomes part of the environmental stimuli the self reacts to (Mead 1934). With an uncertain body, ones world becomes uncertain, and a vulnerable self emerges as a result. The body serves as a narrative resource for stroke survivors as they produce their ongoing biographies. The data we present here may exemplify what Mead referred to as the conversation of gestures, whereby expressions of sorrow, frustration, confusion, or anger about ones physical condition reect the selfs assessment and investment in it-self. The stroke experience changes the lived body and in turn transforms the self through the process of self-reection. This process comes to life as stroke survivors produce their ongoing biographies. The self/ body dialectic (Gadow 1982) becomes a continual self-dialogue wherein both body and self speak and listen. In other words, the self/body dialectic becomes a conversation, a dialogue that continually transforms who and what one is. Our study has shown that mind-body dualism is not simply mind over matter but rather a continuous conversation between two partners of the self. The mind speaks to the body, asking it to perform particular tasks. The body, through everyday testing, then speaks back, either conrming the usual self or presenting the self with new challenges (failure to perform routine activities) that prompt one to reformulate the everyday world through the ongoing process of self-interpretation. Bodily testing provides direct empirical evidence for the survivors existential experience and management of stroke. They know what they can do by testing their bodies to their limits, and thereby establish what their bodies can or can no longer do. That the survivors experience successes and failures at every turn leads to the establishing of a new, phenomenological understanding of bodily knowledge. This style of bodily reection can be compared to the notion of narrative reconstruction (Williams 1984) wherein a person reconstructs his or her life in the context of a continuous disability. By orienting this reformulation of self around the concept of biographical work, we have presented a far more dynamic representation of the mindbody dialogue than previous studies have suggested, intricately illustrating the dynamic and continuous ebb and ow of mind, body, self, and world. This ow becomes quite obvious when respondents compare prestroke and poststroke capabilities and embed their selves in a continual process of bodily testing. They then use this form of self-embedding to present personal inventories of management strategies to produce new meanings not only to their bodies but to their very selfhood as they experience both in everyday life. Although many researchers have explored biographical work in chronic illness to some degree (Kaufman 1988), the work of Gubrium and Holstein provides the most nuanced theoretical appraoch. As Bury and many others have noted, the sudden onset of chronic illness causes a biographical disruption, thus leading to a disruption of both self and body. As survivors recover, they use their prestroke experiences as a means of giving meaning to the poststroke body and establish causal relationships to determine why the stroke occurred. This calls to mind Gubrium and

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Wallaces article, Who Theorizes Age? (1990). While many theories in the social sciences, epidemiology, public health, and biomedicine attempt to explain how and why people have strokes, we also want to ask, who theorizes illness? While a large proportion of scientic research seeks to establish causal relations between variables, it is quite intriguing to nd everyday individuals doing the same, speaking the same language as science and philosophy. By reassessing the mind-body dualism, bodily testing, and biographical work, stroke survivors dene the poststroke body as a newly limited entity bound within the horizons of subjective, everyday theorizing and practical considerations. While many quantitative studies of health and illness see the body as a universal entity whose meanings are either self-evident or objectively determinable, our data indicate that the experientially meaningful biographical body is ever-renewing, arising from the ongoing dialectical relationship between contextually dependent relationships that traditional Cartesian thinkers describe as a mind-body dualism and that social interactionists describe as being a social object that is experienced as a lived subject. While stroke survivors presented the biographical work we reviewed here in the context of a research conversation, the data indicate that they do not solely perform such work in a qualitative interview but in the ongoing and everyday dialogue between body and self.

Acknowledgments: This research is funded by a Department of Veterans Affairs

Health Services Research and Development grant award (NRI 98-183-1) to Maude R. Rittman, Ph.D., RN, Principal Investigator, and partially supported by the Rehabilitation Outcomes Research Center (RORC), NF/SG V.A. Medical Center. The authors wish to thank the anonymous reviewers for Symbolic Interaction for their helpful and insightful comments and the editors, Kathy Charmaz and Simon Gottschalk, for their interest in our research and manuscript. We are indebted to Jaber Gubrium for his involvement in the research project. Last, we sincerely thank Pamela Duncan, director of the RORC, for her ongoing, outstanding support.

REFERENCES
Becker, Gay. 1993. Creating Continuity after a Stroke: Implications of Life Course Disruption. Gerontologist 33:14858. . 1994. Age Bias in Stroke Rehabilitation: Effects of Adult Status. Journal of Aging Studies 8:27190. . 1997. Disrupted Lives: How People Create Meaning in a Chaotic World. Berkeley: University of California Press. Becker, Gay and Sharon R. Kaufman. 1986. Socio-Cultural Mechanisms of Rehabilitation in Old Age. Final Report. Grant #AG04053. National Institute on Aging, Washington, DC. . 1995. Managing an Uncertain Illness Trajectory in Old Age: Patients and Physicians Views of Stroke. Medical Anthropology 9:16587. Bury, Michael. 1982. Chronic Illness as Biographical Disruption. Sociology of Health and Illness 4:16582.

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Chapman, Elizabeth. 2000. Conceptualisation of the Body for People Living with HIV: Issues of Touch and Contamination. Sociology of Health and Illness 22:84057. Charmaz, Kathy. 1991. Good Days, Bad Days: The Self in Chronic Illness and Time. New Brunswick, NJ: Rutgers University Press. . 1995. The Body, Identity, and Self: Adapting to Impairment. Sociological Quarterly 36:65780. Corbin, Juliet and Anselm Strauss. 1987. Accompaniments of Chronic Illness: Changes in Body, Self, Biography, and Biographical Time. Pp. 24981 in Research in the Sociology of Health Care, vol. 6, edited by J. A. Roth and P. Conrad. Greenwich, CT: JAI Press. Descartes, Rene. 1901. A Discourse on Method: Meditations and Principles. Translated by J. Veitch. London: Everyday Paperbacks. Doolittle, Nancy. 1992. The Experience of Recovery Following Lacunar Stroke. Rehabilitation Nursing 17:12225. . 1994. A Clinical Ethnography of Stroke Recovery. Pp. 21123 in Interpretive Phenomenology, edited by P. Benner. Thousand Oaks, CA: Sage. Elias, Norbert. 1978. The History of Manners: The Civilizing Process. Vol. 1. Oxford: Blackwell. Ellis-Hill, Caroline, Sheila Payne, and Christopher Ward. 2000. Self-Body Split: Issues of Identity in Physical Recovery Following a Stroke. Disability and Rehabilitation 22:72533. Foucault, Michel. 1977. Discipline and Punish: The Birth of the Prison. London: Tavistock. . 1988. Technologies of the Self. London: Tavistock. Frank, Arthur. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Gadow, Sally. 1982. Body and Self: A Dialectic. Pp. 86100 in The Humanity of the Ill, edited by V. Kestenbaum. Knoxville: University of Tennessee Press. Garro, L. 1994. Narrative Representations of the Chronic Illness Experience: Cultural Models of Illness, Mind, and Body in Stories Concerning the Temporomendibular Joint (TMJ). Social Science and Medicine 38:77588. Giddens, Anthony. 1979. Central Problems in Social Theory. London: Macmillan. Gilman, Sander L. 1995. The Beautiful Body and AIDS: The Image of the Body at Risk at the Close of the Twentieth Century. Pp. 11572 In Health and Illness: Images of Difference, edited by S. L. Gillman. London: Reaktion Books. Grove, Kathleen, Donald P. Kelly, and Judith Liu. 1997. But Nice Girls Dont Get It: Women, Symbolic Capital, and the Social Construction of AIDS. Journal of Contemporary Ethnography 26:31737. Gubrium, Jaber F. and James A. Holstein. 1997. The New Language of Qualitative Method . New York: Oxford. Gubrium, Jaber F. and B. Wallace. 1990. Who Theorizes Age? Ageing & Society 10:13149. Hughes, Bill. 2000. Medicalized Bodies. Pp. 1218 in The Body, Culture and Society, edited by P. Hancock, B. Hughes, E. Jagger, K. Paterson, R. Russell, E. Tulle-Winton, and M. Tyler. Buckingham, UK: Open University Press. Kaufman, Sharon. 1988. Illness, Biography, and the Interpretation of Self Following a Stroke. Journal of Aging Studies 2:21727. Kaufman, Sharon and Gay Becker. 1986. Stroke: Health Care on the Periphery. Social Science and Medicine 22:98389. Kelly, Michael P. and David Field. 1996. Medical Sociology, Chronic Illness, and the Body. Sociology of Health and Illness 18:24157. Lupton, Deborah. 1994. Medicine as Culture: Disease and the Body in Western Societies. London: Sage. Mead, George H. 1934. Mind, Self, & Society: From the Standpoint of a Social Behaviorist . Chicago: University of Chicago Press. Monks, Judith and Ronald Frankenberg. 1995. Being Ill: Self, Body and Time in Multiple Sclerosis. Pp. 10734 in Disability and Culture, edited by S. R. Whyte. Berkeley: University of California Press.

Disrupted Bodies

87

Nettleton, Sara and Jonathan Watson, eds. 1998. The Body and Everyday Life. London: Routledge. berg, Peter. 1996. The Absent BodyA Gerontological Paradox. Ageing & Society 16:70119. Olesen, Virginia. 1992. Extraordinary Events and Mundane Ailments: The Contextual Dialectics of the Embodied Self. Pp. 20520 in Investigating Subjectivity: Research on Lived Experience, edited by C. Ellis and M. G. Flaherty. Newbury Park, CA: Sage. Saltonstall, Robin. 1993. Healthy Bodies, Social Bodies: Mens and Womens Concepts and Practices of Health in Everyday Life. Social Science and Medicine 36:714. Sanders, Caroline, Jenny Donovan, and Paul Dieppe. 2002. The Signicance and Consequences of Having Painful and Disabled Joints in Older Age: Co-Existing Accounts of Normal and Disrupted Biographies. Sociology of Health and Illness 24:22753. Shilling, Chris. 1993. The Body and Social Theory. London: Sage. Turner, Bryan S. 1996. The Body and Society: Explorations in Social Theory. London: Sage. Waskul, Dennis D. 2002. The Naked Self: Being a Body in Televideo Cybersex. Symbolic Interaction 25:199227. Waskul, Dennis D. and Pamela van der Riet. 2002. The Abject Embodiment of Cancer Patients: Dignity, Selfhood, and the Grotesque Body. Symbolic Interaction 25:487513. Williams, Gareth. 1984. The Genesis of Chronic Illness: Narrative Reconstruction. Sociology of Health and Illness 6:175200. Williams, Simon J. 1996. The Vicissitudes of Embodiment across the Chronic Trajectory. Body & Society 2:2347. Williams, Simon J. and Gillian A. Bendelow. 1998. The Lived Body: Sociological Themes, Embodied Issues. London: Routledge. Yoshida, Karen. 1993. Reshaping the Self: A Pendular Reconstruction of Self and Identity among Adults with Traumatic Spinal Cord Injury. Sociology of Health and Illness 15:21745. Zola, Irving. 1991. Bringing Our Bodies and Ourselves Back In: Reections on a Past, Present, and Future Medical Sociology. Journal of Health and Social Behavior 32:116.