Crafting a Subjective Experience of a Rehabilitative Facility: An Autoethnographic Account

The Accident

I had been lying in bed at about 11.30 p.m. on my 6-year-old granddaughter’s birthday, when I had a text message saying that she was now home from being out. She lives in New Zealand and there is a 5-hour time difference from California at this time of year. It was still not her bedtime, so I climbed out of bed to call her and wish her a happy birthday. I carefully tried not to disturb my wife by turning on any lights and walked out to another upstairs room. In the dark, I did not realize I was as close as I was to the stairs leading down from our upstairs bedroom in our two-storeyed house. Suddenly, I put my right foot down where I was expecting to meet carpet. There was nothing. Before I knew it I was falling halfway down the stairs, about 10 steps. The newel post on the landing at the halfway point stopped my headlong rush. It caught my chest on my right hand side. The pain was sharp and intense and I called out.

My wife came running, switched on the light and uttered reassuring words. In a few minutes, she called for an ambulance, which quickly arrived. After checking vital signs briefly, the ambulance officers loaded me onto a gurney and drove me to the Emergency room (ER). I waited a couple of hours in a drafty waiting area until a room was available and I was seen by nurses and a doctor. I was medicated with morphine for the intense pain and given an x-ray and an functional magnetic resonance imaging (fMRI) scan to rule out head injury. Fortunately for me, there was no such head injury but the chest x-ray revealed a broken rib. A further fMRI scan of my chest the next morning showed that I had, in fact, broken five ribs. It also showed a punctured lung. I was transferred to a room in a critical care pneumothoracic unit, when such a room became available.

So there it was. I had become a patient. The trauma I had survived constituted a substantial interruption (Frank, 2013) to my life narrative. Frank suggests that illness typically makes for such an interruption, for those who are ill and for those who are lay carers (Williams, 2012). A narrative that contains such illness is seldom anticipated in advance. I certainly was not anticipating this particular interruption. The distinction that Williams makes between professional and lay carers needs to be noticed to be particular to a neoliberal regime in which more and more is brought under economic management but a sharp boundary is drawn under the private world.

After 8 days in the hospital unit, it was decided that a chest tube inserted into my right lung had successfully drained off enough of the excess fluid. I was also making enough progress in physical therapy that I could be transferred to a skilled nursing facility for rehabilitation. Another ambulance ride ensued.

When I arrived at the second hospital, I was admitted by a personable nurse, who explained a number of things about what they could offer me. He also explained what my “rights” were, including my right to refuse any particular treatment and to discharge myself, if I so wished. While explaining these rights, he made what seemed to me a curious statement. He justified my right to have a say in what happened to me here by saying, “After all, you’re a human being.” I appreciated the acknowledgment of my agency in such a statement but it also raised the question, “Just what kind of human being would I be expected to become in this context?” Over the course of the next 2 weeks, I would gradually find this out.

That will be the main point of this article: to articulate the kind of human being that is legitimized in the skilled nursing facility. In the end, it is an identity question that I am raising but it has implications for how individuals are constituted in this particular context. Would it be the limited rights that Claire Williams (2012) scathingly refers to as “superficial individual rights in market individualism” (p. 63)? Or would it be more than that?

A Critical Stance

I shall take a critical stance toward this question. I do so without being an especially oppositional person. Taking a critical stance will not be an expression of who I am personally so much as an opportunity for learning. I shall repeatedly address the question, “What kind of human being is fostered and promoted and what kind of human being is downplayed or excluded?” My aim is to open up the possibility that some other kinds of personhood can be explored and legitimated. In the end I want to use a critical stance as a creative tool, rather than a destructive one.

I also want to make it clear that in no way am I criticizing the people who work in the facility in which I was cared for. They are no doubt doing the best they can and working diligently within what they know. They certainly gave me constant care that I often appreciated. Much less am I wanting to criticize those who are designated as patients in this facility. They too are doing the best they can. My focus will be mainly on the discourses that I found at work in this facility, rather than on the people who speak the lines or adhere to the scripts of these discourses.

To maintain this critical stance, I shall draw upon several counterdiscourses that transgress the dominant narrative about what is possible. The first is a Foucauldian version of discourse theory. I take discourse to mean the conventional way of speaking that is systematic in nature and governs the thinking of many of the participants in its realm. It, therefore, becomes implicated in power relations to the extent that dominant discourses specify what is normal, what is right and what is true. However, Foucault (Deleuze, 1988) stated that it was his purpose not so much to demonstrate a gloomy message that power relations were all-consuming but to “show people that they are much freer than they feel” (p. 10).

A narrative, according to Cheryl Mattingly (1998), is a “unit of discourse” (p. 11). Therefore, in documenting discourse I often found myself constructing a narrative or having one constructed for me. A quality that a narrative exudes that sometimes does not seem so salient in discourse theory is movement through time. Since such movement through time was critical in this instance, it seems consistent with discourse theory to also draw upon narrative theory.

I shall also make use of Gilles Deleuze’s (1988) concept of a line of force that can be diagrammed as in a graph and that gives shape to the contours of an event. Deleuze (1990) argued that events are logically prior to identities. To be consistent with this argument, therefore, I need to show how particular identities were shaped by events and how particular events led to moves that created “category maintenance” (Ellwood & Davies, 2010) for particular identities. In itself, this idea is radical in that it transgresses the more common notion that identities are consistent across contexts and are informed by concepts like “personality.”

I also intend to make use of positioning theory as developed by Bronwyn Davies and Rom Harré (1990). Positioning theory is useful for showing how particular narratives and discourses constitute personhood in particular directions. While a discourse can be found operating consistently in a specific context, the discursive positions that participants, either subtly or obviously, start from are seldom identical with this discourse. We should not be surprised by this. Persons are not discourses, even though they might be shaped by them.

An Autoethnographic Method

I shall locate this study in the history of autoethnography. Autoethnography is a research practice in the qualitative research field, which is sometimes regarded with suspicion by other researchers, because of its avowed subjectivity and its rejection of objective methods. Foundational authors Carolyn Ellis and Art Bochner (2006) put it this way: “Our enthusiasm for autoethnography was instigated by a desire to move ethnography away from the gaze of the distanced and detached observer and toward the embrace of intimate involvement, engagement, and embodied participation” (pp. 433–434). In autoethnography, researchers articulate as data their own experience and the responses of others to it. It is a relatively recent addition to the research stable. However, it has developed far enough that there are a variety of approaches to its legitimation (Hughes & Pennington, 2017). Heewon Chang (2008) has outlined two such approaches as analytical and evocative autoethnography. She describes analytical ethnography as more realist and evocative ethnography as more interpretivist although both forms can be distinguished from autobiography and memoir genres by their explicit focus on “cultural analysis and interpretation” (Chang, 2008, p. 46). Carolyn Ellis (2009), in a review, agrees but comes down more on the evocative side whereas Heewon Chang is more on the side of analytical autoethnography. Hughes and Pennington (2017) explain, “It is unique from a research perspective in that the researcher is the subject of study” (p. 5). Its aim is to use the self in order to question relationship between the personal subjectivity and the wider social world. It is often used, as Ellis, Adams, and Bochner (2011) contend, to undertake “cultural analysis through personal narrative” (p. 17). Both elements, cultural analysis and personal narrative, are important. One is approached through the other and the personal stories are not just told for their own sake but for the analytical purpose that they serve. They are used to illustrate larger cultural values through the immediacy of personal stories.

Its use is also associated with the deliberate privileging of subjugated voices and the questioning of the value of objective ones. The reason for pursuing this agenda lies in the need for a method that,

explicitly demands we connect our personal issues to public concerns and our research to issues of power and politics…[and] deepen[s] our understanding of how the socio-political resides within personal meanings, identities and lives lived at the intersections of sexuality, gender, race, class, disability and age. (Aranda, 2018, p. 3154)

While this article does not have a primary purpose of making a theoretical contribution to gerontology in general, it can be said to draw from a critical gerontological stream of thought. As Marshall (1997) showed, however, critical gerontology takes many forms and may be described as splintering in various directions—Marxist, feminist, postmodern, social constructivist approaches, and so on. If anything can be said to guide its inquiry it is what Marshall describes as a “nomad science,” drawing on Deleuze and Guattari’s (1987) distinction between major and minor science. To the extent that it draws on life experience as its primary field of reference this article is an example of minor science and yet still holds promise of what might be theorized. My aim has been to both draw on and bolster such theorizing through giving a personal account.

A brief comment is needed on research ethics. Because my hospital experience was not planned I was not in a position to set up an ethical proposal in advance through my university’s Institutional Review Board. I have, therefore, taken care not to include references to anyone who could be identified as a result of this study. In some cases, this has meant a need to delete things that could have led in the direction of identification. No one in this story, including myself, participated in it solely, or even mainly, as a research participant. All were doing their professional duties.

It was during my stay (about half way through it) in the rehabilitation facility that the idea of writing about this experience began to formulate in my mind. I was not planning it at first. From this moment on I began to take mental note, I had no journaling equipment with me, of what was happening. About a week after I returned home, I began writing this piece from memory in order to make sense of my experience. Doing so meant locating my experience in the context of other writers in this vein. It, therefore, involved me in a reading program as well as a writing one.

The Rehabilitation Facility

One of the first things I had to establish when I entered the rehabilitation facility was what kind of patient I was going to be. This was a narrative question. It entailed deciding on the kind of narrative I was seeking to position myself within. I had a variety of resources to call on in answering this question. One of them was my own experience of being a patient in a hospital ward for the previous 8 days. Here, I was in a struggle, not always successfully, to find the will to heal, to live, to go forward. I knew that in the rehabilitation facility I needed to find a position in a different narrative (with a different beginning and middle, not to mention a different endpoint) in order to achieve these ends.

I had also been told ahead of time some of what to expect in the rehabilitation facility by one of the doctors at the medical hospital. She stressed that it would be up to me how long I was there, according to how hard I worked at rehabilitation. Early on, I made a decision to work hard to graduate from this facility. I was influenced in maintaining this decision by the fact that I was younger than many of the other patients (pride played a role here) and by the fact that I had endured a traumatic injury that was expected to heal, rather than a chronic or degenerative condition. I was aware that at the same time I was also suffering from the degenerative condition of Parkinson’s disease. I was motivated by the fear of these two, the traumatic injury and the Parkinson’s disease, becoming conflated in a way that would mean I would stay longer than I wished in the skilled nursing facility.

I was also influenced by the story of my mother’s hospitalization some 18 years earlier after suffering a series of strokes. After a larger stroke, she was considerably immobilized and became described as somewhat depressed at this time (although I take Arthur Frank’s point that it is standard for modernist medicine to misuse a concept like depression and to fail to recognize the presence of what he calls a chaos narrative). She seemed to emerge from whatever it would best be called through her relationships with the nursing staff. In these relationships, she offered herself as a patient with things to give them. She made friends with the nurses. Despite the ways in which her health was placing limits on her, she had refused to give in to self-pity and instead had concentrated on who she could become for others. They genuinely loved her in response and she likely received better treatment as a result. I had admired her skill at eliciting the kind of treatment she was benefiting from. Now I thought consciously about how this was my turn to be like her. I could not do it the same way she had but I could formulate my own similar path. I set out to win the hearts and minds of the staff in the rehabilitation facility.

How Might One Live?

Cheryl Mattingly (1998, p. 128) references Martha Nussbaum (1990, p. 3) as asking the question, “How should one live?” As a question that, to answer, one must generate a narrative in response, I warmed to it. However, I think the way that Todd May (2005) formulates the question (in his book about Gilles Deleuze) is better. For May, after Deleuze, the pertinent question is, “How might one live?” (p. 1). It suggests a less obligated, less essentialized, pathway and values a more experimental, more creative approach and forecloses on the possibility that there is a best answer to be sought out.

I made a decision, however, when I first came to the rehabilitation facility that I was going to make sure that I did as many things for myself as I could. This would be one way that I would live. In Lyotard’s (1984) terms, it constituted a series of “little narratives” (as opposed to his characterization of grand narratives). It meant getting up out of bed often to visit the bathroom, to dress myself, to shave, and to wash among other things. At first I felt weak doing these tasks but was determined to build up my own strength. I had lost strength during 8 days lying in a hospital bed, during which time I was in considerable pain. I was, therefore, determined to overcome disinclination and some pain to persist in this plan. I successfully managed this plan and implemented the decision throughout my 2-week stay in the skilled nursing facility.

I made this decision to break with a narrative that had been powerfully persuasive in the hospital. This was a narrative in which I would have welcomed death as an endpoint. I was thinking especially about how I would not wish to be resuscitated if I had a heart attack. I did not want to go on living in a vegetative state in this circumstance. Nor did I want to position my wife or my children as caregivers any more than was necessary. Claire Williams (2012) documented persuasively the second-class status of carers in medical systems under a neoliberal agenda and suggested that “an elitist and rigid relationship prevailed between the public sphere and the private caring sphere” (p. 58). Her position as a carer Williams described as “regarded either as invisible or a nuisance” (p. 59) with “little decision-making power and little say in care planning.” She was not, however, opposed to caring functions per se, seeing them as “a significant expression of the social bond between people” (p. 58).

I overheard two nurses talking about me at a change of shift. One explained to the other that I was “ambulatory.” I had not been aware until I heard this that I had entered an identity category. In the small world of the ward, this category was accepted but, as I was to learn in the next 2 weeks, there were implications that followed from it.

I learned about these implications mainly from the physical therapy staff when they came to my room to take me to physical therapy. In different ways, they expressed that they were uneasy about allowing me to walk there (∼50 m). At first I was taken in a wheelchair, then I was required to use a walker, then I was allowed to walk but with a strap around my waist, and, finally, I was allowed to walk with someone walking closely beside me.

The Liability Discourse

The coordination of these concerns, and the consistency with which they were expressed by different people, convinced me in the end that I was up against some firm instructions that they had been given. It started to become clear that what I am calling the liability discourse was dominating this context. By liability discourse I mean the fear of being taken to court and tried. I was careful not to place myself or be placed in a category of difficult or oppositional patient. I, therefore, made my own determination explicit but tried to maintain it always as negotiable and relational. I, therefore, made concessions to these requirements, while gradually freeing myself from them.

The problem with firm instructions, however, is that they are not so negotiable. Nor are they context-related. What I began to realize was that the physical therapy staff and the nurses were responding, not so much to me in particular, as to what had been communicated to them as a general fear of people falling. My own determination was running up against this general fear. It seemed that I was encountering a discourse that was serving a governing function.

No doubt this general fear was well enough founded. Falling is very common among older people (especially with people older than me), and I had been admitted to the hospital after an accidental fall. The question was, however, what kind of human being was I being permitted to be in response to this general fear. I remain convinced that my determination to be “ambulatory” was in the best interests of my recovery from the traumatic injury. My overall levels of pain were diminishing and I was steadily getting stronger in dealing with the daily tasks of personal care. However, just because something is a reasonable fear does not mean it fails to work as a governing discourse.

A series of small remarks alerted me to a line of force that was running through these events and exerting influence on the staff responses. I shall refer to it as the liability discourse and it added the fear of being sued to the general fear of falling among older people. I could easily imagine how it had become mixed into the general instructions the staff were responding to. The fear of being sued was operating on both individual people and also on the general system in the facility. It was a legal discourse and it introduced a note of caution into the identities and identity calls of staff.

The question for me was about how the liability discourse might be impacting my own options for taking up identity positions. According to this line of force, what I was trying to do constituted a risk, even if, at the same time, it was advancing my recovery. I was being offered a position in a legal identity discourse, which was different from the discourse of optimum healthy functioning. In the former, I was constituting myself as a risk, even if in the latter I was doing things that were good for me. In Deleuze’s terms, each time I went out of my room was an event that took place at the intersection of two lines of force. Across a series of such events, I had to fashion and negotiate an identity path in a set of relations.

As people began to see and have confidence in my ability to manage myself, the liability discourse began to fade a little as a line of force. It never completely disappeared, even after I came home, but it did assume less definitional power. Such, I assume, is what typically happens in the process of negotiation, otherwise known as the process of social construction (Burr, 2015; Gergen, 1999). The extent to which the liability discourse could operate in the hospital assemblage (DeLanda, 2016) as definitive seemed to be tied to the position that legal discourse occupied in the wider society. In California this position was a powerful one that was systematically stronger than any individual. In Lazzarato’s (2014) terms (after Deleuze and Guattari) it rendered people dividuals, rather than individuals, or only partially being able to act agentically and more accurately performing a function in a larger machine.

A Professional and a Family Member

I was also aware of the professional position (or more accurately the lack of it) I was being offered. In my life, I have put considerable energy into building a professional identity and I have been reasonably successful in doing so. All of that seemed to disappear when I entered the hospital. To all intents and purposes, I was no longer a professor with an academic reputation. Instead, I was a patient about whom it was more important to ask about bowel motions than publications. There were, however, some individuals who made the effort to ask about who I was apart from being a patient. I was grateful for these inquiries. They allowed me to become for some moments a professional person.

I was also more than an individual. I was a member of a family. My wife and daughter had central roles to play in my recovery. My wife’s father came from another state to be with me when I came out of hospital. Before that, my son and granddaughter traveled to California from New Zealand to visit me every day for a week. I introduced them to hospital staff whenever I could but there were not many inquiries about how they and others might figure in my health plans.

Arthur Frank (2002) speaks about this distinction as the difference between being ill and experiencing illness. The latter requires us to contemplate where illness fits into a life. It amounts to seeking more than a biomedical truth about what is happening. Frank refers to it as a spiritual truth. It includes issues in the relationship between the person who is ill and a caregiver and with family members. It includes also the formation of a narrative (with a beginning, a middle and an end and complete with surprises) around the trajectory of an illness.

Those who inquired into who I was in addition to my medical symptoms did more than make relational small talk. They enabled me, even if only for a small moment, to step outside the biomedical narrative and to represent the trajectory I was on as part of a life. Whenever this happened, I was flooded with gratitude. When it did not happen, I was disappointed but, at the time, not so sure why. It was only after reflection that I came to this conclusion. If hospital staff had seen it as part of their role to stimulate such conversations with my carers and family members, it might have benefited the identity shifts we were all going through.

Pain Medication

When I was given pain medication, I was conscious of the intrusion of a particular line of force whose name was the opioid crisis (Health Resources and Services Administration, 2019). It hovered like a specter over the dispensing of pain medication. In this discourse, patients were treated with suspicion. They might be angling, intentionally or not, to become addicted to opioids.

The nurses, therefore, carefully downplayed their own decision-making in the process of delivering medications that could lead to addiction. And yet, patients such as myself clearly needed help from pain-killing medication. Once again, two lines of force were pulling in different directions. The compromise that was reached put the onus on the patient. It was possible to be given painkillers, but only if one asked for them. If someone did not ask, it was assumed that they could get by without these drugs. This was not quite a Catch-22 situation but it was close to it.

A problem arose, though, when I had asked to be given such medication and then a shift changed. I had been told that I could not be given the medication until 6 hours had passed since the previous dose. This 6 hours took me past the nursing shift change. The nurse who had taken over was unaware of the communication that had taken place between myself and the previous nurse. However, I did not know this and assumed that he was aware of it.

Midnight was the hour when I would be allowed to take the medication.

It came and went. At first, I assumed that the nurses were busy and could not free themselves to give me the pain medication. I did not want to appear entitled, since it did not fit with the relational narrative I was endeavoring to build. I was, therefore, prepared to wait a little. But I could not sleep, partly because of the pain. When I eventually pushed the call button the nurse came into the room. I had not seen him before this moment. I explained that I had been supposed to be given the medication at midnight. He responded, “That medication is only given, if you ask for it.” Managing my frustration, I explained that I had, in fact, asked for it before the shift change and it had been agreed that it would be given at midnight. The mistake was cleared up and the nurse came back with the medication relatively soon afterwards.

My belief was that the line of force created by the opioid crisis lay behind what was later acknowledged as an error. I was not the slightest bit interested in opioid abuse and, in fact, wanted to minimize my intake of painkillers as quickly as possible but the nurses were not to know or to trust that. After a few days, I stopped taking morphine and a week later, ceased taking a softer painkilling drug. These were my own initiatives. However, the policies based on suspicion remained in force. It was clear that a larger assemblage was operating than anything my own expression of agency could mitigate. I resolved, therefore, to manage the painkilling regime myself, rather than to cede control to the medical staff.

Illness Narratives

There were also differences in the narrative being constructed by the medical staff on the one hand and the rehabilitation staff (physical and occupational therapists) on the other. Cheryl Mattingly (1998), in her ethnography of occupational therapists, describes a “tension deep within the professional culture” (p. 130) of the profession she studied. Occupational therapists felt pulled to “structure interventions in a way that fit a medical model of clinical work” (p. 130) and to grant a place of secondary importance to “interventions tailored to the individual needs, motives and desires of the patient.”

Before I had been transferred to the rehabilitation facility, a resident doctor at the hospital had told me, “It’s going to be up to you there. You have to do the work yourself if you want to get out of there. What you put in is what you’ll get out of it.” She had implicitly been telling me that this message did not apply so much in the critical care unit at the hospital. There the medical staff exercised much more control. They would be responsible for the medication and any surgical interventions. It seemed that she was referring to the differences I would encounter as a result of having rehabilitation professionals (physical and occupational therapists) more actively involved. Their work was much more about collaboration and, therefore, my own choices would be more crucial.

And so it proved. Cheryl Mattingly (1998) notes how the medical interventions and the rehabilitation interventions operate on different orientations to time. She refers to these as different narratives with different endpoints (often described as treatment goals, p. 83). If, as she says, “Time is structured by a movement from one state of affairs (a beginning) to another state of affairs (an ending)” (p. 94), then it matters for the process of becoming how these “states of affairs” are constructed. It is definitely, Mattingly argues, “not clock time” (p. 64) that governs the construction. The uncertainty or “subjunctivity” (Bruner, 1986) of the future goals creates narrative “suspense” (Mattingly, 1998, p. 97).

For the biomedical interventions, the end-goal was characterized in terms of a well-functioning body. For rehabilitative interventions, the end-goal was characterized in terms of fitness to perform daily tasks of living. However, the former takes precedence in the world of the hospital. As a result, the physical and occupational therapists would come to my room and take me to their treatment room but would step aside and come back later, if I was engaged in any other medical activity at the time (e.g., x-rays or a conversation with a doctor). As Mattingly suggests, each of these foci represents a different “interpretive perspective” (p. 110) and produces a bifurcated self in patients. In Mattingly’s account, patients and occupational therapists are pulled between a “biomedical conception” of the body and a “phenomenological conception” of personhood.

In my case, the biomedical conception was focused on the healing of my broken ribs, x-rays of my lungs, blood tests, bruising, the taking of requisite medications, and whether or not I had a bowel motion. All of these things were taken to mean that I was healing as I should. They were framed by the rhythms of the ward—medication delivery, sleep time, meals, washing, and visitors. My job was to settle into these rhythms and to await the bodily changes that would come. I was required to be patient. The word for my identity seemed accurate to this purpose.

The phenomenological conception was focused on physical therapy that strengthened and maintained my balance and flexibility for the muscle groups I would need to exercise in daily life. At first, the therapists concentrated on recuperating my ability to walk, which had been weakened by pain, by 8 days of lying in a hospital bed and was also compromised by my Parkinson’s disease. Meanwhile, occupational therapists were interested in whether I could toilet myself, dress myself, knew how to operate a “reacher,” could put on socks and shoes, could lie down without pain on my side, and could walk up and down steps. These were all very practical knowledges and I dedicated myself to mastering them and showing that I could do them. At first, putting on socks and shoes and lying down on my side were accompanied by a lot of pain. By the time I was ready to come home, I could manage these tasks with less pain. After a week or so of being at home, the pain itself had largely dissipated. The self required of me was more a more active one. It was more performative than the biomedical processes required.

Meanwhile, on the biomedical side, my broken ribs were slowly healing, bruising that ran down my chest and leg was diminishing, I was taking all the medications I needed, and having frequent enough bowel motions to keep the nurses happy. X-rays of my lungs were taking longer to show change but that was to be expected. The healing of lungs happens in a different narrative time.

When I returned home, I was visited first by a nurse, then by a physical therapist, then by an occupational therapist, and then by another nurse. All of them told me they were satisfied that I was making good progress. My biomedical self was doing the right kind of healing and my phenomenological self was performing the necessary daily tasks satisfactorily. I was also given a series of flexibility and balance exercises by a physical therapist to continue doing at home. It seemed helpful to keep these two selves I was being guided towards as endpoints separate in my mind. If keeping these two selves separate nudges a person in the direction of a postmodern multiple understanding of the self (Gergen, 1991), then so be it.

Arthur Frank (2013) suggests the importance of constructing a story out of an illness in order to get on top of it. He argues that avoiding being colonized by the medical assemblage requires a person to be conscious of their experience of illness. Doing so makes them part of the postmodern condition, according to Frank. He therefore advocates for the “wounded storyteller” as a postmodern motif. This version of a self takes up an active position, rather than a passive one. While a patient is literally one who suffers, a storyteller is more active in constructing a story. He or she fashions the story of what has happened in various forms, given different audiences to the telling. Nevertheless, he or she is doing the fashioning, not so much subjecting himself or herself to it.

Frank (2013) offers some alternative narratives that seem to operate as lines of force in the lives of people who are ill or in my position. His restitution narrative is counterbalanced by a chaos narrative. The former is the subject of popular thinking about medicine and is exemplified by television advertisements for drugs. It is a prototypically modernist discourse, which emphasizes recovery or cure as the goal and returning from illness to a satisfying life. It promotes an uncomfortable relationship with degenerative diseases and with death—conditions from which one does not recover and cannot be cured. He cites remission from cancer as an example. By contrast, the chaos narrative is dreaded by modernist science, because it emphasizes suffering itself, yet often needs to be recognized and lived with in order to carry on a restitution path.

For me, the restitution narrative seemed to be what was expected of me and what I expected of myself. There was a nagging discomfort, however, that formed around other people who were living in the rehabilitation facility. Some of them seemed to struggle with dementia. One man could be heard crying a lot of the time. Another was prone to angry outbursts. Yet another was 10 years older than me and ruefully told me that he expected to die in this place. I thought of my own condition which was produced by a specific trauma—the fall. It allowed me to entertain Frank’s restitution narrative. And yet as I returned home I started noticing and thinking about my degenerative decline—mostly from Parkinson’s disease. The restitution narrative in part seemed like a game we (the staff at the skilled nursing facility and I) were playing. I received letters and cards that assumed the primacy of this narrative. Nobody, apart from myself in some private moments that I shuddered to dip into, was eager to acknowledge the chaos narrative, the narrative of degeneration and inexorable decline.

This disinclination was palpable among the physical and occupational therapists. They seemed to take anything but the restitution narrative as almost a personal affront. If pain, or tremors from Parkinson’s, made it impossible to complete tasks that they had assigned me, they seemed at a loss to respond to it, except with a determination to exhort me to greater efforts next time.

Limitations

There are some obvious limits to this account, however. I was only in the rehabilitation facility for 2 weeks. It was a short time, on the one hand, to become familiar with the discourses and lines of force operating there. On the other hand, it was possible that these 2 weeks would have made the strongest impression upon me, even if I had stayed longer. Another limit was that I was clearly in the rehabilitation facility as a result of a specific trauma. Therefore, my experience was skewed towards the restitution narrative from the start. Another obvious limit was that my account was constructed from the point of view of a user of the facility, rather than from the points of view of those who work in it. Limitation is probably not the most accurate word to describe what I was endeavoring to do. It was more a case of privileging my experiences ahead of others from the belief that professionals need to pay attention to lay voices too. In defense of publishing work from this angle there are many other accounts written by those with a professional stake and this perspective is scarcely lacking.

Less obvious, but no doubt still apparent, is my own professional commitment to a narrative and to a discourse perspective. I believe, along with Gilles Deleuze and Felix Guattari (1996), that a qualitative perspective offers an insight into differences in kinds of experience, while a quantitative perspective offers insight into the degree or intensity of experience. Since I was engaged in forming identity discourses I, therefore, claim that there is room for a qualitative autoethnographic account such as this one.

What I would recommend for further research is a longer term, fuller, ethnographic study of patients’ perspectives on the relationship between the restitution narrative and the chaos narrative. It could also gauge the significance of the opioid epidemic on relationships between patients and professionals, particularly nursing staff, and the extent to which the liability discourse was serving a governing function in rehabilitation facilities. The latter two purposes would require some targeted research in perhaps several rehabilitation facilities in order to further these inquiries.

Concluding Remarks

To bring this article to a conclusion it remains to bring together some of the threads I have woven into it. It has been written from the point of view of the user of a skilled nursing facility, rather than from the point of view of those who work in it. Although there is no neutral term that is free of connotations, I chose the term “user” for its agentic connotations, rather than “patient,” which would land us straight into the middle of the biomedical discourse, or “consumer” or “client,” which would land us straight into the legal/commercial transactional or professional discourse. This choice signals a theme that I have wanted to emphasize: the crafting of a self in the emergency of illness. Lorraine Hedtke and I have used the term crafting before in relation to the creation of a pathway through grief (Hedtke & Winslade, 2017). It seems equally applicable here.

To achieve such a crafting I had to negotiate a pathway through a range of discourses and lines of force. Many of these remained unspoken and were only discovered over time, often as they were transgressed. I think here of the liability discourse and how it seemed to compete with a discourse. Whereas the liability discourse was legal in origin, the biomedical discourse was more about biological healing with the aid of drugs and medical interventions. It operated on a timescale dictated by the body and its healing capacities. Or the opioid discourse which engendered suspicion of those who needed painkillers. These are examples of the ways in which social or cultural analysis of such larger forces was made possible by opening up personal narratives. Sometimes crafting required me to make sense of the work being done by an assemblage and accept that it was bigger than me and I was only able to exert a small influence on it.

I also struggled with competing visions of what kind of human being I might become in the process of crafting my way forward. The biomedical vision of what a patient should be contrasted with a phenomenological vision of an active performer of recuperative tasks. Doing these tasks was more agentic than the kind of biomedical healing that involved being, rather than doing. On the other hand, both these different visions were firmly planted in the soil of a restitution narrative and scarcely admitted the degenerative limits I was facing. To access this narrative requires what Frank describes as a chaos narrative.

To the extent that an autoethnography can prise open such narratives I believe I have used the genre to raise some questions that further research might take further. This is a justifiable use of a branch of qualitative research and it suggests further studies, either quantitative or qualitative, that can elucidate it. The analysis of the cultural forces I have articulated is here made more visible by the use of personal narratives that give them immediacy. What I have attempted to do is to establish links between the immediacy of personal stories and experiences and the literature on illness narratives, such as that written by Arthur Frank. Each has been employed to make the other more explicit.

I also believe, along with Claire Williams (2012) that, “Because we are bodies, everyone requires care at different times” (p. 66). Receiving such care should not be regarded as posing a burden on the state, on the medical system or take presumptive advantage of the generosity or competency of those who are designated as “private” carers. All of the people involved, including the users of healthcare, should be involved in “important social processes that weave the social fabric into a denser structure where compassion is paramount” (p. 66). These are fine words to conclude with. They outline a vision that is inclusive and not limited to a neoliberal, market-oriented vision of personhood.