Rehabilitation as a fight: A narrative case study of the first year after a spinal cord injury

Abstract

From a case study, complexities and ambiguities characterising the rehabilitation process following a spinal cord injury were revealed. The process of rehabilitation from spinal cord injury is characterized by many different and often conflicting emotions such as despair and hope, depression and optimism, and disappointment. Supporting the patient calls for a detailed understanding of this process. In this study of the first year after a spinal cord injury, one case was especially illustrative. Through a narrative approach the complexity of the rehabilitation process and its core elements were conveyed. Data analysis was based on Ricoeur's theory. The findings were that fight was a core component of the rehabilitation process. Revealing four kinds of fights we discovered a constructive fight with one self and a fight together with other people in contrast to a devastating fight against other people and a fight against oneself stemming from a conflict. The conclusion was that rehabilitation could be seen as a fight where the staff played an important role stimulating and supporting. If they engaged in the patient's, fight the patient's well-being processes towards life. Otherwise, the staff were another burden.

• Case study
• fight
• narrative
• rehabilitation
• spinal cord injury
• struggle

Introduction

A spinal cord injury entails a sudden and dramatic alteration of the body, usually causing a devastating and persistent, physical impairment. During the rehabilitation period, the patient with spinal cord injury tends to focus on concrete physical goals and progress associated with improved physical functioning (Laskiwski & Morse, 1993). The rehabilitation period is a time of conflicting emotions (Lohne & Severinsson, 2005). On the one hand, the rehabilitation period is characterized by good days, optimism and hope, which may be attributed to experiences of bodily and/or functional improvement. On the other hand, it involves feelings of dependency, uncertainty and bad days, where the patient feels like giving up (Dewis, 1989; Laskiwski & Morse, 1993; Morse & Doberneck, 1995; Lohne & Severinsson, 2005). The frequency of depression, anxiety, lowered self-esteem and despair indicate that adjusting following a spinal cord injury is a troublesome process (Hancock, Craig, Tennant, & Chang, 1993a; Hancock, Craig, Dickson, Chang, & Martin, 1993b; Hampton & Qin-Hilliard, 2004; Lohne & Severinsson, 2004).

Laskiwski and Morse's (1993) field study showed that the rehabilitation is a long and arduous process that involves profound distress because of the loss of body functions. In this situation fraught with setbacks some of the patients also suffer from lack of support from the health professionals (Laskiwski & Morse, 1993). Further investigation of the rehabilitation process is necessary to uncover what affects this process and how the experiences evolve over time. Knowledge about these issues may sensitise clinicians to the complexities involved in the rehabilitation process. By gaining more knowledge about what facilitates and hinders the individual patient's adjustment process and life situation, nurses and other health professionals may improve their ability to adjust their care and support to the individual patient's needs.

The aim of the present in-depth analysis of one case was to uncover the rehabilitation process from the patient's perspective and the impact on her self-understanding and well-being.

A narrative approach

Increasingly, narratives are recognized as essential means for interpretation through which persons gain meaning and understanding in life (Ricoeur, 1986; Polkinghorne, 1988; Ricoeur, 1991; Horsdal, 1999). The study of a person's narratives opens for a deeper understanding of the contents of the meaning created by the narrative (Skott, 2004). Combining Ricoeur's (1991) philosophy and Frankl's (1970) theory of regaining meaning, understanding arises through the narrative structuring of past, present and future. The possibility of maintaining cherished values from the past in the future helps the person to act in the unwanted, unbearable present. Thereby narratives have an important function in merging the new situation with the past and in producing a platform for the future. The narrative is created in the moment it is being told. Each time it is being told, it is recreated with a view to furthering our understanding.

Mishler′s (1984) work shows how narratives serve to bring forward the patient's perspective. Kleinman (1988) added an understanding of the relieving aspect of the narrative and its function in coming to terms with the illness. Frank (1995) underscored that illness calls for stories in order to repair damage. He highlighted that society offers certain kinds of master-stories for the suffering person to identify with.

Whereas most authors have focused on the told stories themselves, Mattingly′s study (1988), conducted at a department for rehabilitation of patients with spinal cord injury, showed how the clinic was full of incomplete narratives in the sense that the ending was unknown. Mattingly′s point was that narratives, though untold, or just hinted at, served as reference points to a future worth going for (Mattingly, 1998). The study was special in the sense that the researcher “caught” the narrative in the ongoing clinical practice as opposed to the narratives that were constructed at the researcher's request.

In this study, we tried to combine the strength of narratives as they reveal the patient's perspective on coming to terms with the damage of the spinal cord. The narrative hence becomes an instrument that serves the purpose of regaining meaning. Time was not only a structure within the narrative; we also explored how the narrative itself developed over time.

The present study was designed as a case study using longitudinal data from interviews and field observations during the first year following a traumatic back injury. Using different “optics”, we sought to create a fruitful dialectic between different perspectives on the rehabilitation process, thereby encouraging reflectivity and strengthening the validation of our findings (Lincoln & Cuba, 1985). The narrative approach was consistent with Yin's recommendation of an explicit theoretical and analytical framework in the case-study (Yin, 1994).

Setting and subject

In Denmark, the context of this study, patients with spinal cord injury are assessed very early on in the acute care unit whether or not they are to be admitted to the rehabilitation unit. The rehabilitation team is highly specialised and nationally and internationally acknowledged. Patients admitted to the rehabilitation unit are discharged after two to twelve months. In the larger study, twelve patients with spinal cord injury were included as they were admitted to the rehabilitation unit. Among these, one case was especially illuminating because of its troublesome nature. Due to the patient's unique reflexivity and strong character, the story gave in-depth insight in the complexity of the rehabilitation process as a fight. Similar patterns were uncovered the other cases as well, but were less explicit. In the following, we analyse the case of “Belinda” (fictitious name) in-depth.

Data collection

Interviews and field observations (Figure 1.) were conducted after the accident to uncover the patient's interpretations of the situation and her attempts to create understanding and coherence in her experiences over time.

Figure 1.  Data collection the first year after the accident.

Data was collected more frequently in the beginning, because we assumed that the patient's regaining of meaning would be closely related to the physical progress experienced (Kirkevold, 2002). The interviews sought to encourage a narrative approach by inviting the person to talk freely about her situation, including any experiences and thoughts (Cicourel, 1988; Kvale, 1998; Pedersen, 1999). The patients were posed an open question like “How are things now?” In contrast to a retrospective perspective in storytelling, the prospective collection of the stories during the rehabilitation gave the researchers material to interpret and illuminate the development of this process. The interviews were contextualised by field observations and field notes focusing on the daily life during rehabilitation in the rehabilitation institution and at home after discharge.

Data analysis

The analysis was based on Ricoeur's (1973) theory implying three analytical steps. In the naïve interpretation (Figure 2) the text from interviews and field observations and notes were initially read and interpreted each by each and as a whole (Ricoeur, 1973). The patient's enormous effort to engage in a troublesome rehabilitation was the main interpretation.

Figure 2.  Sketch over the process of the analysis.

In the structure analysis (Figure 2) we initially sought to challenge and substantiate our guesses from the naïve interpretation (Ricoeur, 1973). This happened to become an iterative process where the analysis was continued in four different ways until the interpretation seemed to be the most significant among possible interpretations (Ricoeur, 1979).

First, we saw at the sentences in dialectic with the text as whole (Ricoeur, 1973; Pedersen, 1999). This generated a large number of themes; determination, frustration, identity, thankfulness, hope, expectation, disappointment, despair, loss, control and fight to mention the most important. That emphasized the complexity of the case, but which did not provide an overall picture of Belinda's rehabilitation.

Next, we sought to investigate the process of regaining meaning over time by conducting a structure analysis of the total narrative text, based on Frankl's (1970) assumption that meaning is created by narratively connecting past, present and future. Thus, we looked for themes told in a time perspective. Here the challenges of identity dominated.

This process led us to a third phase in the structure analysis, in which we investigated the “stereoscopic structure” of the total text letting some events rose to the foreground, while others receded into the background (Ricoeur, 1973). Thus, the events in the foreground were interpreted as highly significant in order to capture Belinda's first year of rehabilitation.

During the fourth and final phase of the structure analysis, we sought to grasp the structure of the rehabilitation process in terms of major daily activities, the central actors involved and the progression of the different rehabilitative efforts over time. This was done in order to contextualize Belinda's story in the evolving rehabilitation effort.

The theme “fight” came forward as the main theme across Belinda's narratives. To explore this theme we went back to Belinda's experiences of this first year after the spinal cord injury and found four kinds of fight.

As we sought to communicate her experience of the first year after of rehabilitation, the stereoscopic structure analysis highlighted that some experiences marked the total experience. To maintain the complexity, the patient's experiences was retold as a scene with exact statements and the researchers retelling both implying what the patient had told and data from the field observation and notes inspired by Polkinghorne's (1995) narrative reconstruction. Four scenes were necessary to tell the emplotted story of Belinda's unfolding trajectory during the first year. In these scenes, we identified the four kinds of fight.

In the critical interpretation had been an important part of the dialectic in the iterative analysis and ends with a comprehensive understanding, which we named Belinda's fight and the impact on her self-understanding and well-being we address these four kinds of fight.

Ethical considerations

The ethical committee in the county of Aarhus had no objection to the study (21.12.2004). Permission was obtained from the Head Nurse and the Medical Consultant at the rehabilitation department in West Denmark. They agreed to let the primary nurse present written information of the study to patient eligible for participation in the study. At the first meeting, the researcher provided oral information about the study. The participant was assured of the confidentiality, anonymity and that the consent could be withdrawn at any time. Owing to the early stage of this serious injury, the psychologist at the rehabilitation department was informed when the researcher had talked to the patient and if there had been anything to remark, so that she could attend to the patient's condition afterwards.

In this case study, the principle of confidentiality and anonymity was a central issue in the presentation of the results; in that the participant could possibly be recognized by staff and fellow patients. To counteract this, details contributing to identification are omitted or slightly changed. In addition, we asked the participant to read the article through and asked whether she had objections to publishing her story in this way. She did not. On the contrary, she appreciated the plan for publication, as she found it captured decisive elements in her experience of the rehabilitation process.

Findings

After a brief introduction to Belinda's history, we provide an overview and description of the four kinds of fight uncovered in the case. Then, we present Belinda's rehabilitation in four scenes and highlight how fight was played out in the daily life situations of the rehabilitation process.

Belinda—a brief introduction

Belinda was a 60-year-old woman at the top of a gratifying career, looking forward to a time, where she could plan her own time doing more of her favourite activities. Privately, she lived a satisfying life with her successful husband, two grown-up children and regular contact with her grandchildren, for whom she played an important role. In addition, she had many friends and acquaintances. This active, strong woman, who was in control and had much influence on her environment had an incomplete fracture of her spinal cord, when she fell from a ladder, tidying up the house in preparation for her sixtieth birthday. All of a sudden, everything was changed.

Belinda's rehabilitation trajectory began at an almost zero. She was paralyzed and she could not even scratch her nose, which emphasized her helplessness. After she was admitted to the rehabilitation unit Belinda experienced that there was something to work for. In the rehabilitation unit, the most important thing was the training. She could not walk, but there was a possibility, that she would be able to walk again one day. She could hardly use her hands, but there was a possibility, that they could become better. She used to be a very active person and very skilled with her hands. Therefore, she had a very hard time accepting that this was her body. She had previously been sporty and fond of exercises and would strive to do her best. During the first year, Belinda reached a level, where she could walk short distances, using one cane. Her hands were still dysfunctional, which meant that she could not do the house- and needlework that meant so much to her. In addition, fatigue hindered her activity.

Four different kinds of fight

Belinda's first year as disabled was marked by a paradox between exerting an enormous amount of energy, achieving relatively small victories, compared to a loss so overwhelming that it threatened her existence. Her losses included the loss of her fully functional body, her valued roles, her independence, her dignity and her worthiness. Belinda expressed that had it not been for her appreciation of life rather than death, her losses could have result in an overriding grief. Despite her great losses, Belinda appreciated her progress and the fact that she had a caring and loving family and friends. It also helped her to see people who were worse off manage impressively. Through an in-depth analysis of Belinda's narratives, we found that “rehabilitation as a fight” was the core in this complexity. Fight was understood as an effort of a strenuous or even violent character. Overcoming the problems after a spinal cord injury was like being in a battle. The enemy was the disabled body. The overarching goal was a possible future, but this required a number of victories along the way, regaining functions and solving problems. A number of “allies” were present, particularly staff and family. Their engagement in the patient's process was extremely important, due to the patient's dependency. The “alliance” was precarious. If the “allies” engagement in the patient's goals was withdrawn, it was experienced as “resistance” and the “allies” would turn into “enemies”.’

In Belinda's rehabilitation, there were four kinds of fight (Figure 3.). They came into being through a process. It started as an ardent fight with oneself and with those who helped Belinda, viz. a “fight with oneself” and a “fight together with other people”. However, because of an unsolved conflict, it changed nature and developed into a “fight against other people”, which ultimately became a “fight against oneself”.

Figure 3.  Four kinds of fight.

The fight with oneself

The fight with oneself was defined as the patient doing things that demanded great effort, sometimes more than the patient felt she could. It was an uphill struggle, and maybe she could not see the top. However, she was determined to move up, because it was the only way forward. This fight with oneself happened on the inside in harmony with one self, and it often took the form of an inner dialogue persuading or pushing oneself. The fighting activity made Belinda feel less imprisoned in her situation. Therefore, the fight was perceived as positive. The fight was also strategic in the sense that she, in order to optimize the rehabilitation, constantly wondered and examined how she could do her best and how she could involve the best professionals. The patient fought for a life worth living by seeking to improve her bodily functions. When she could imagine a future, her hope and energy increased. The only way to reach this future was through fight. Thereby, the fight became a meaningful activity in itself and gave meaning to the present. Fighting with oneself was a precondition for a fight together with other people as allies, because it provided the necessary energy and determination.

The fight together with other people

The fight together with other people was a fight fought “side by side” in pursuit of the same goal as allies. The patient's fight to get on with life became the others’ fight in that they saw it as their job and responsibility to fight the patient's fight. Their motivations differed depending on whether they were a carer, a loving husband or a child or a loving and kind friend. What they all had in common, though, was that their efforts were influenced by their agreement with and support of the patient's goals. They worked together with the patient to optimise the patient's rehabilitation. This fight together depended on the others’ ability and willingness to support the patient's effort to seek control and her pursuit of her own perspective.

The fight against other people

The patient's fight against other people was a reaction to the experience of lack of support, disagreement about goals and prioritisation or inadequate solutions. The purpose of this fight against those who were supposed to help was to optimise the rehabilitation. This fight was directed towards achieving a consensus about how to move towards a future worth living and it had devastating consequences for both parts. For the patient, she was all of a sudden on her own at a time when she needed help the most and when she needed all her strength to fight for her life. Existentially, the fight against other people posed a serious threat because it challenged the very meaning of the patient's fight to regain health. When the patient could not pursue her fight from her perspective, the fight seemed to loose its meaning. To counteract the threat, she pursued the fight on her own, in her mind. Moreover, to hot det 'ger udgangspunk den narrative analyseys until e than a method. mandag. crisis. Others’ resistance in approaching everyday situations could have far-reaching consequences for the inner harmony and could send the patient into serious existential considerations. The patient's battle to uphold or change personality was strongly influenced by the approach of the surroundings. Though fighting against oneself, survival also demanded maintenance of the positive fight with oneself, resulting in an inner negotiation.

Belinda's first year after the spinal cord injury told in four scenes

In the following, we present Belinda's story in four scenes. From the scenes, we extract how the fights appear over time in different situations and how they impact on Belinda's experiences of meaning (Figure 4.).

Figure 4.  Placement of scence I-IV in time.

In the first scene, Belinda experienced insufficient help from the staff. It is an important scene in Belinda's story, because in that situation the rehabilitation changed from being supportive to being the opposite. It brought forward the strong person Belinda used to be. Unfortunately, her resistance and her conduct had far-reaching consequences for her inner harmony.

The next scene illustrates how Belinda's disability affected the situation at home and the inner struggle this caused.

The third scene shows how victory during rehabilitation was a construction that could only be made possible if the surroundings supported its “staging”. Everyone had to be supportive, not only because of the patient's disability, but also because the victory was overshadowed by the recent, enormous loss. This scene also shows how staff could inadvertently underscore the patient's dependency.

Between the third and forth scenes a change took place. The training, which had previously been pivotal, had turned out to be an obstacle to other more meaningful activities. Belinda could not stand using all her energy and time on training any more. It seemed meaningless now, where there was too little progress and the desired result seemed remote.

In the following, the scenes are presented and analysed in more detail.

Scene I: “The bowel problem”—when consensus brakes down

Belinda sits alone in her wheelchair in her room. She is alone in more than one sense. The nurse has just left her and she sits with two small envelopes of powder (aperient) “thrown in [her] face and told to try them and if they don't work it is more or less [her] own fault” (one month post injury). Belinda asks herself: ”But how can they leave the responsibility to me? “They are the experts!” (one month post injury). She thinks about what has happened to the staff since they treat her like this. She is used to people confirming that she is okay. That is probably why her big network time after time surprises her with their thoughtfulness and care. However, in relation to these people at this unit it apparently went wrong, even though Belinda says,

… it's not like I'm unpleasant, well I try to be constructive …. [one month post injury]. I know very well that I'm a bit too fast and it doesn't go with everybody's temper, [but] it's not like I think I'm bloody impatient [one month post injury].

Previously, her rapidity had always meant that she was in front. Now was a time when she needed this ability. It had been a fight to get across that she could not accept that she was not in control of her bowel movement. Frankly, she could not live with the risk that she might “shit in her pants” (two months post injury). It had happened while she was at home on a weekend and now she would not go home until she was sure that it would not happen again. She could not cope with that too.

Aspects of fight in the first scene

This scene was a result of the resistance Belinda met when she tried to take control of her own situation and experienced that no one else responded in the way she expected. Until now, she had experienced that she fought with herself and together with the staff. In this scene, Belinda tried to make the staff fight together with her. However, disagreeing on how to manage the bowel problem, she realized that the staff would not fight her fight in the way she thought was right. As she got her own way, the staff refused to be a part of it. The consequence of the fight against the staff on how to manage a common daily activity was for this patient the beginning of an existential crisis. The resistances from the staff made her consider that she had to change her preferred and previously recognized behaviour in order to exist in the unit. Thus, the fight against herself was initiated. Here an important element was the negotiation of identity. Belinda wondered whether changing values, personality and behaviour was reasonable and whether she was ready to bear the loss of the personality she liked and the goals she had in order to regain her earlier life.

The episode described in the first scene was very important in Belinda's experience of the rehabilitation period and plan for rehabilitation. She won the battle about how to handle the bowel problem, but the price was high. Afterwards she felt disliked by the staff and during several episodes, she felt that they treated her badly and she fought back.

Scene II: “At home”—negotiating values, roles and identity

Belinda and her husband are having a nice lunch at their terrace. The sun is shining and they are going to have a good time. However, the nice slices of meat from the butcher are not served on dishes in the way that Belinda usually serves them. Very practically, the meat is wrapped in paper—“the things just piled on top of each other” (two months post injury). Belinda struggles with herself; in her thoughts, she compares the scene before her with how deliciously she would have laid the table. It is a nice time being at home and the food does taste great. Reflecting on the situation later, Belinda is also a bit proud of herself for being able to refrain from criticizing her husband: “It was actually a small victory; at least I shut up” (two months post injury). She is proud because she realizes that although nothing is like it used to be at home and she is not very happy about the state of her house, she cannot do what she used to do with the wheelchair and her clumsy hands. Belinda tells about the arrangement of the things in the home in her husband's charge and comments:

In principle it doesn't matter, but of course, if I didn't care, [things] would just have been lying placed around, and it would not have looked as it usually does in our home. But my husband can't do it right now. It's also a question of having the energy. Well, I need a bit more energy and patience, and he does what he can, and he is awfully nice and happy with me, it's not that, and well I have to learn it” [one month post injury].

Aspects of fight in the second scene

Coming home, Belinda was confronted with another home than the one that was a product of her careful, continuous effort. Now home was something different. This emphasized her disability. Here the potential “opponent” was her husband, in that he did not do things the way she would like him to in a fight together with her. However, when considering whether the home could be re-established in her spirit or she had to accept that loss too, she knew that he did his best. In this situation, though she was tempted to initiate a fight against him to make him keep the house up better shape, she avoided that motivated to change her values and expectations. Feeling her husband's love made her try harder to adjust and she felt okay. Thus, she fought against herself. Yet, this was a long-term transformation and the cost was the loss of the home, as she loved it. Belinda was moving back and forth, negotiating and struggling with herself in relation to both her values and her behaviour. Her reward could be a life together with her husband that would make room for both of them.

Scene III: “Champagne”—celebrating in the absence of victory

Belinda's stay at the rehabilitation unit has finally ended. She is going home. It has lasted five months—longer than most stays. She has watched many other patients being discharged, and she has become acquainted with new fellow patients several times. Even though she has been happy for those who have left, it has hurt that it was not her. However, she has fought for a goal only a few of them had: being able to walk and to walk without crutches. Now it is her turn. She has promised herself that it will be celebrated. Due to the sacrifice and the hard work, she and her fellow patients, and the staff shall celebrate with champagne.

So here we are, sitting here in the big, bright physiotherapy room. It is 3 PM or 15.00 and everybody is invited. Belinda is giving champagne, because she is going home tomorrow. A small steel table (normally used in the units, ambulant clinics, operation rooms for wound treatment, catheterization, etc.) is filled with fruit, snacks and chocolate. It stands just inside the door in the big physiotherapy room. Physically it takes up a quarter of the room, and it is being squeezed a bit by the door. The guests are placed in a wide circle around the table. The staff are sitting and standing in the same circle as the patients. Some of the patients have arrived from the units. A relative has also arrived as she usually does at this time of day. Belinda says a few words and everybody wishes each other good luck. There is plenty of champagne, but a real bubbling mood cannot be sensed. Belinda toasts loudly and says that her brother in law can get more of the sparkling drink, but it does not really feel right. All the patients seem happy on her behalf. The staff help everybody to get a glass of champagne and a piece of chocolate or fruit. Then we sit there around the table in the middle. Nobody steps in as hostess and serves champagne and delicacies. No one is in a bad mood but there is not much conversation. A staff member, Belinda's personal physiotherapist, makes a friendly remark to Belinda. Belinda is the hostess and with her voice, she can start the party. However, like a conductor, she needs the musicians to make the music flow, but the staff present do not take up the role as Belinda's musicians.

Aspects of fight in the third scene’

In this scene Belinda was ‘left on her own’ among many helpers. The champagne was her idea and was seen as a sign of victory; but it is not a real triumph, because although she had fought very hard, she had not yet reached her goals and the doubt about whether she would reach her goal increased. Maybe she had to reduce her prospects for the future. Therefore, Belinda's privation and fight had to continue, but today this was overshadowed by the fact that she was going home. The real reason for the celebration was her leaving the place where she for so long had felt that she was a difficult person surrounded by people who did not live up to her expectations of expertise and humanity. In the champagne scene, Belinda fought with herself to be the good hostess, a thankful patient and a fellow patient saying thank you and good luck to the ones staying on. She needed the others to fight together with her, to make this scene “a scene of victory” and they did not. Belinda was “staging” the scene, but the others did not play wholeheartedly along. Maybe they disagreed with the idea, maybe the timing at 3 PM or 15.00 was wrong or maybe champagne did not taste the same in a feeding cup. Besides, is it even possible to drink champagne when you are in an “impossible” situation?

Scene IV: ‘Nothing to fight for

Belinda sits in her old favourite chair in her big, bright living room. She is totally exhausted. She has just arrived home in a taxi from training at the local residential home. Progress has faded out after nine months and training seems meaningless. Belinda says: “All that training makes me feel nauseated, I don't feel I do anything else but slogging away at physical training” (nine months post injury). There are still successes, but they are based on getting more strength, figuring out how to do things best or on applying technology. Belinda has achieved much since the accident. However, now she cannot maintain the prospect of walking more than short distances with or without a crutch. She also realises that the house she loves so much has to be sold. She still cannot use her hands properly to cook and do needlework. Belinda says:

I get tired and it means that when I've spent all my time on training and the physical things, then finally I think, no! All your life goes with training and nothing else and then being tired and sitting vegetating here, and maybe if I have the energy I'll read a bit and that's basically it. And then I think my life is empty. But it's just; I cling to the thought that if I go on training then maybe I might get so well that I would also be able to do some of the other things.” (Nine months post injury.)

She sits here alone in her beautiful house with a view, while her husband lives the active life she also used to live. She should be happy. There are so many things to be thankful for, but she is feeling great sadness. What is she going to do with herself? Tears come and she says:

… It had been bloody better if I had died when I fell down.” [Nine months post injury.] ”but I can't allow myself to say that! … As long as you have a family and a nice husband and everything, then you would be a devil …” [Nine months post injury.]

Aspects of fight in the fourth scene

Where Belinda before had fought so hard, she could no longer see the meaning of it. In this situation, where there was nothing left to fight for, the positive element of fight with oneself and together with other people was emphasised. Here depression lurks, because though fighting with herself to continue training, it did not lead to the progress she hoped for and did not satisfy her thoughts about a future. Ending the fight meant giving up, which she did not want to do. Therefore, energy and well-being drifted away. Even her inner dialogue, telling herself that she had much to be happy about, made no difference. Had she really won so many battles for nothing?

Belinda's fight and the impact on her self-understanding and well-being

We found that Belinda's positive “fight with herself” and “fight together with other people” turned into a “fight against other people”, ultimately becoming a “fight against herself” because of an unsolved conflict that Belinda experienced as a devastating event. Thus, fight seemed to be a core element in Belinda's rehabilitation. In Belinda's hope and determination to reach a life worth living, she found meaning in the unwanted present by doing her very best to optimise the rehabilitation. To fight was the only way out. She fought with herself and together with the others, thankful for the possibility of doing so and thankful for the help she received. This emphasized the importance of the staff's encouragement of her fight, and their fight along with her. However, the study highlights that the staff had to let the patient lead, as soon as she was capable of doing so. Thereby, they could support the patient's effort at finding meaning. The patient had to follow her path if the rehabilitation should be meaningful to her struggle to get on with life. As the staff refused to follow Belinda, her fight for herself also turned into a fight against the staff.

Although Belinda's identity was at stake from the moment she lay paralysed, and had to decide on her attitude to the situation trying to imagine a life worth living, her identity was seriously challenged by the staff's resistance. Control was a core element over which Belinda fought against the staff. However, the real issue for Belinda was her life. She felt alone and lacked support. Nevertheless, as the weak part, a patient and newly disabled in a foreign place, she could not leave. Both frustration and disappointment arose; the negotiation about who should decide marked the beginning of a fight against herself. Self, home, dignity, worthiness were at stake. These elements were at risk even in the fight against other people. Thus, Belinda's story show that even by winning the fight against the others, there were losses. Even so, the process of the fight gave her a reason to get up every morning. This was clearly emphasised by Belinda's despair in the situation where progress was fading out and she saw no hope for a future worth fighting for. We left Belinda twelve months after the accident, where she described her situation as a kind of a vacuum. She said: “I am still in this awkward state of limbo where I think ‘What shall become of it all, what am I to do and how will my life be after this’?” (12 months post injury.) This shows that the situation when progress fades out was hard to get through, and though Belinda tried hard through inner dialogue and new initiatives to fight with herself, she lacked the strength.

Discussion

In this paper, we present a case study revealing the complexities and ambiguities characterising the rehabilitation process after a spinal cord injury. The case study also demonstrates how the staff inadvertently may hinder rather than facilitate the process of getting on with life. By utilizing a narrative approach, the essential components of the process, their development and interaction over time were uncovered. The case study was part of a larger investigation of the rehabilitation period during the first year after a spinal cord injury; addressing the question of how patients with spinal cord injury regain meaning during the rehabilitation period towards a changed life (Angel, Kirkevold & Pedersen, 2008a, b).

The present case study shows that fighting to regain a meaningful life was a core element in this rehabilitation process. This existence of the fight as a core component in a patient's story after a spinal cord injury is supported by Swatton and O'Callaghan's study of six women's experiences of “healing stories”. They found struggle to be a core component (Swatton & O'Callaghan, 1999). This raises the question of whether struggle is inevitable in a process where the result depends on the person's efforts, but where physical outcome may also remain more or less unaffected by what they do. The importance of fight in rehabilitation may possibly be explained by highlighting recovery and rehabilitation as processes where the person meets resistance. The result does not come easy and it is no fun. The person may do her very best and still not reach what she hoped for. Our study emphasizes that there is a battle going on with allies, but that the relationship is a frail balance where the allies and even the person herself/himself can turn into enemies.

Our study adds to and accentuates the study of Kvigne, Kirkevold and Gjengedal (2004) following the life of twenty-five women after a stroke. These women strove, struggled and fought during their recovery (Kvigne et al., 2004). Striving was necessary to overcome the everyday demands. In addition, when their roles in the past were challenged and transformation necessary, or the possibility of regaining functions seemed smaller than they hoped for, they struggled. They also struggled to find new ways of living their lives. Keeping negative feelings away strengthens the positive feelings. The authors concluded that these women fought for a meaningful continuation of their life and to regain functions. By differentiating between different kinds of fights, our study highlights that there is a constructive fight that with benefit can be stimulated and supported and a devastating fight that should be avoided.

According to Frankl's (1970) theory, the fight can be seen as the tool making the person move towards a future, which contains valued things from the past maybe in a transformed way. The important thing is the movement from the unwanted situation towards a future worth going for. Our study documents the importance of this movement to a person who strives against being stuck in an unbearable situation. Still, the existence of the fight suggests that there is a need for further research into whether the fight creates meaning itself or if there is genuinely something to fight for.

The fight with oneself and together with other people was positive. It was not simply a matter of winning or losing; it was important to see winning as the goal. The importance lay primarily in the process that unfolded during the fighting, because the process made it easier to endure the unbearable situation. This is referred to in Laskiwski and Morse's study (1993) as helping the patient with spinal cord injury to stay in power, which provides hope. The goal is progress but much satisfaction lies in just reaching intermediate goals.

Something else that we discovered in this case was that it was a totally different matter when the fight was rooted in conflict. Thus, the character of the fight changed totally when the staff became the opponent. Not only was the patient alone and lacked support, but the staff fought back. The patient, newly disabled in a foreign place was the weak party. This was emphasised by the fact that it was her life they fought about. The staff could go home and live a normal life. The patient in this case could not run away from the unit or the situation. She could not even take a break. Anger, frustration, disappointment, demand of change, the threat to her identity, the threat of giving up, the threat of loosing herself were all very negative elements in this fight. The fight turned out to be destructive, initiating a transformation of the person. Knowing that transformation can be for the better and for the worse, one may ask whether having a particular personality and behaviour is required in order to receive adequate help. This challenging question needs further investigation.

The transformation uncovered in this study challenges Charmaz’ finding of suffering from a “loss of self” where the chronically ill person him- or herself lets things go and therefore increases his or her loss (Charmaz, 1983). This study suggests that the persons surrounding the patient have a significant impact in terms of “losing oneself”. The patient was in the beginning of a chronic situation and the disability reduced her possibilities in the same way as a chronic illness. Even if she was not getting worse, she could not rely on her body and strength as she used to. This study was especially enlightening, because we captured the very beginning of this process and we saw the loss of self as a possible outcome of a negative fight. In her fight for a life, the patient was dependent on the help of other people. In the situation where disagreement rose, a fight for control appeared. The patient was facing a choice: to give up control and do as the staff said and get help, or to seize control and help herself. Both outcomes had negative consequences for the ability to reach the desired prospect of a future.

In Morse and O'Brien's (1995) retrospective study of 19 persons’ transition to disability, they found that striving to regain self-understanding worked as a merging of the old and new reality; a process that started after the patients came to terms with their disability. The present case study shows that the fight in relation to the self began even before the patient had come to term and the new reality was only a feared imagination (Morse & O'Brien, 1995).

Seeing rehabilitation as a fight helps us understand what may help the patient and what may not. The fight seemed to release resources. However, there are fights that make people stronger while other fights weaken them. This fact makes the distinction between the four kinds of fight useful because though they were ongoing and were fought simultaneously, they had different causes and consequences.

Strengths and limitations of the study

A weakness of this case study is that it may not be representative of most cases in terms of the visibility and strength of the uncovered pattern of fight. We will maintain, however, that the case clearly discloses the different kinds of fight that may be involved in the rehabilitation process and hence, allows us insight into a theme that may be less discernible in other cases and difficult to discover in clinical situations. To reach this kind of insight, the narrative approach is useful. According to Ricoeur's (1979) interpretation theory, a narrative analysis moves from the subjective experience to universal insights. Thus, the assumption is that this case tells us something about the world, even though it is also unique.

Conclusion

Fight is a positive reaction during rehabilitation that the staffs with benefit can stimulate and support. Owing to the patient's dependency, the staff plays an important role and the character of their influence is decisive for which kind of fight the patient must fight. If the staff fight along with the patient and is ready to encourage, comfort the patient, and participate in the re-interpretation of goals, the patient fights with herself or himself together with the staff. Thereby the staff supports the patient's effort to find meaning, maintain a positive self-understanding and experience well-being. This study shows that it is of enormous importance that the staff avoids fighting the patient, because that may lead to the patient's fighting against the staff and against herself.

By conceiving rehabilitation as a fight, we are able to understand why assistants can be seen as opponents and, in worst case, enemies. It may seem absurd because the same people see themselves as helpers, trying to achieve the same goal as the patient. This case study demonstrates that this is not always the experience of the patient.

Acknowledgements

First and foremost, the authors should like to acknowledge “Belinda” both as a participant, who shared her experiences and as an assistant who read and approved an earlier version of this article. She wanted to contribute to make a difficult situation easier for others who were so unfortunate to find themselves in a similar situation. In addition, the authors thank the staff at the rehabilitation unit who gave their consent and facilitated the study. Finally, the authors wish to thank the donors Danish Council of Nursing, Novo Nordic, and Danish Nursing Research Society.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.