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. 2022 Oct 1;4:100100. doi: 10.1016/j.ijnsa.2022.100100

Ten years of living with an injured spinal cord: A qualitative longitudinal study

Sanne Angel 1,1,⁎
PMCID: PMC11080325  PMID: 38745602

Abstract

Purpose

Rehabilitation and recovery following spinal cord injury often implies a fundamentally changed life. The aim of this study was to explore the process of living with spinal cord injury for 10 years to identify which factors were most decisive for living a fulfilled life.

Materials and methods

The present study was a 10-year longitudinal qualitative study based on Ricoeur's hermeneutic-phenomenological approach to explore and interpret people's experiences of life during the first 10 years after they had suffered a spinal cord injury. Interviews were conducted with 10 people during the first year and then again after two, five and 10 years.

Results

The process over 10 years showed that a satisfying life can be led despite limitations caused by the damaged spine by balancing possibilities and the life wished for. Reduced body function did not have to hinder people from living a satisfying life. Bodily issues can move into the background when new skills and routines are developed. This enabled backgrounding body conditions, letting other matters foreground. Thus, life can be experienced as good and can resemble the lives of other people of the same age, though strains and struggles were an integrated part of every activity. However, the new normal was disturbed when bodily conditions could not be kept stable or worsened due to illness, often related to the damaged spine. If this challenged the new way of living, the body foregrounded and became the primary focus for effort and attention, and the process of balancing possibilities and the life wished for had to be repeated.

Conclusions

Life 10 years after spinal cord injury can be experienced as good despite limitations, partly resembling life lived by other same-aged people. Having stable bodily conditions allowed other matters to foreground. This was important to the process of reconciling oneself to the situation and balancing possibilities and the life wished for.

Keywords: Hermeneutic-phenomenology, Longitudinal study, Paul Ricoeur, Recovery, Rehabilitation, Spinal cord injury

What is already known

  • •

    A spinal cord injury entails a sudden and dramatic alteration of the body that demands a long and troublesome rehabilitation and healing process.

  • •

    After a rehabilitation period with healthcare professional support, people struggle on their own to improve their bodily function and well-being and to find ways of living meaningful lives.

  • •

    Living a satisfying life with limitations due to spinal cord injury implies that the value of the abilities lost can be found in something else or that new values in life must be found.

What this paper adds

  • •

    Adopting a 10-year perspective, we found that it was possible to reconcile oneself with the situation, balancing possibilities and the life wished for, and thereby living a good life despite limitations from an injured spinal cord.

  • •

    A stable body supports the process of balancing possibilities and achieving the life wished for and allows focus on other matters in life.

  • •

    When a stable bodily condition is lost because of illness or withdrawing from physical training to an extent that challenges the new way of living, the individual will have to start a new recovery process.

1. Introduction

When encountering life-changing health issues, such as suffering spinal cord injury, questions concerning prognosis and the long-term impact of the injury inevitably surface, commanding the patient to show patience and let time reveal what is in store. Spinal cord injury is inherently filled with uncertainty about the individual's future illness and rehabilitation trajectory. When faced with this uncertainty, we need to look beyond the individual person's current situation because important insights may be derived from other people's trajectories. These insights may sketch possible avenues for rehabilitation and hold important information about where to focus short-term to obtain long-term experiential and therapeutic outcomes.

Unravelling other people's stories in a longitudinal perspective may be achieved through qualitative studies of other people's illness and recovery trajectories where data are collected multiple times during the process to achieve deep insights (Calman et al., 2013). A longitudinal design allows the investigator to identify elements important to recovery that may otherwise be forgotten, distorted by memory, or up- or downscaled in purely retrospective studies (Koriat et al., 2000; Ricoeur, 1983).

Longitudinal quantitative studies may produce insight into processes that can be measured in numbers and generate knowledge of the likelihood of outcomes. Qualitative studies, however, may inform about the circumstances of the process and unveil the diversity and depths of people's experiences (Calman et al., 2013; Grossoehme and Lipstein, 2016). They may hence inform healthcare professionals about how to improve and support spinal cord-injured patients’ illness trajectories and recovery processes. Even so, many qualitative longitudinal studies cover a period of only one or two years; i.e. the period when bodily changes and their consequences, still unfamiliar, are in focus. Moreover, most spinal cord injury researchers have a single bodily ailment focus or address issues of depression and hope (e.g., (Lohne and Severinsson, 2005; Lohne and Severinsson, 2004; Kennedy and Rogers, 2000; Craig et al., 1994)). Therefore, researchers do not capture the full picture in a truly longitudinal perspective.

Current longitudinal qualitative researchers have shown that after the first year, people's reactions to the spinal cord injury range from inability to reluctance to face the loss of ‘life as it used be’ to perceiving the accident as ‘an opportunity for change’. Still, people having suffered a spinal cord injury share a deep concern over and insecurity in relation to what life will now be like (Angel et al., 2009; Craig et al., 2017). After the first year of devastating challenges, hopes, worries, and heart-breaking recognition of their dependency and disability, some do find a lifestyle that allows them to live a good everyday life (Morse, 1997; Morse and O'Brian, 1995; Laskiwski and Morse, 1993; Lohne, 2009; Noe et al., 2017).

Following 12 people during the first two years after spinal cord injury, researchers showed that the rehabilitation and recovery process was extensive (Angel et al., 2009b, 2009a; Angel et al., 2011). In this process, it was essential if prior values could be maintained or upheld in new ways or if new values in life could be found. The transition from the rehabilitation institution to home was a particular hurdle in two ways. Firstly, people expected life outside the institution to be a challenge, and they hoped that they would be able to manage. Still, they also feared that they would not (Noe et al., 2017; Bourke et al., 2015). They worried about how they would be met by friends and people in general and if they would be able to live a satisfying life while being dependant on others. They felt that their dependency was intimidating, and it made them fear being experienced as a burden. Secondly, knowing that the health and social care providers’ attitude and assessment of their injury would be decisive for how their life would be made them worry whether the care providers would be sufficiently attentive to their needs and wishes (Noe et al., 2017). These worries are well founded in current literature (Aaby et al., 2020; Williams, 2018; Lohne and Severinsson, 2005; Lohne and Severinsson, 2004; Dorsett, 2001). Although researchers in these studies painted a rather negative picture, investigations of positive experiences have also been conducted (Hammell, 2007, 2004; Weitzner et al., 2011). Lohne and Severinsson (2005, 2004) studied despair and hope and found that the aftermath of spinal cord injury does not necessarily entail depression (Dorsett and Geraghty, 2004; Kennedy and Rogers, 2000; Craig et al., 1994; Hancock et al., 1993). Kennedy et al. (2013) found that the first two years could bring gains. Such gains included greater appreciation of life, relatives, and health services, as well as appreciation of having acquired more knowledge and becoming better at prioritising.

Dorsett, (2001) conducted interviews during the first three years and illustrated the complexity of the rehabilitation after spinal cord injury. Furthermore, Lohne, (2009) found that while adapting to the new life, people focused more on life than on hope in the third and fourth year following their spinal cord injury. In this process, returning to work was important to maintain one's socioeconomic position, though some retained their economic status due to accident compensation (Paul et al., 2013; Meade et al., 2015). After five years, people were dealing with the consequences of their damaged spinal cord in time-consuming new ways (Angel, 2020), but they also had space to focus on age-related life issues similar to those of other same-aged people. Ten years after having suffered a spinal cord injury, people did not necessarily consider the physical deficits as a loss anymore (Angel and Kroll, 2020).

Summarising existing longitudinal literature, the strains and losses experienced by people living with an injured spinal cord were undoubtedly grave. Even so, negative findings of depression and anxiety are balanced by studies reporting hope. In these studies, researchers showed that some people can find a path through times of difficulty and despair and that they are able to adjust and live a satisfying life. Finding this path is a process; current knowledge of this process stems from snapshots of different people's here-and-now perspectives. We used a longitudinal design to allow us to follow the same people over time. This enabled us to better understand their recovery process.

1.1. Aim

To explore the process of living with spinal cord injury for 10 years to identify which factors were most decisive for living a fulfilled life.

2. Design

The present study was a 10-year longitudinal qualitative study (Calman et al., 2013; Grossoehme and Lipstein, 2016).

2.1. Methodological considerations

People's perception of their lives: i.e. their lifeworlds, can be accessed by addressing their experiences. According to Paul Ricoeur's philosophy, people understand themselves and their lives when narrating how new happenings relate meaningfully to the past (Ricoeur, 1983, 1986, 1991). These narratives build on people's personal interpretation of what has happened and become a basis for future actions and expectations (Ricoeur, 1983, 1986, 1991). Rather than presenting facts about how events took place, narratives therefore allow us to access and understand others’ lives (Ricoeur, 1983; Angel, 2019). In this hermeneutic-phenomenological tradition, the researcher used an open approach to the participant's narrative and interpreted them to develop new knowledge (Ricoeur, 1983; Angel, 2019).

2.2. Setting, participants and data collection

Ten participants, six men and four women (Table 1), were consecutively enroled in a convenience sample when admitted to a specialised spinal cord rehabilitation unit in Denmark 1–3 months after their injury.

Table 1.

Demographic description and functional abilities.

Name1 Age2 Civil status3 Employment4 Accident5 Spinal cord injury Bowel/bladder
function6 		Dysfunction
of hands6 		Mobility6
Adrian 30–40 married /6 married academic/ academic road trauma incomplete C4 +/6 + 7 -/ 6–7 wheelchair/6 walk
Belinda 60–70 married / married middle-range training/pensioner fall incomplete C5 -/- +/+ wheelchair/walk with sticks, wheelchair
Debbie 25–30 single /
married		 academic/academic road trauma incomplete C5 -/+ +/+ walk with rollator/
walk
Edward 15–20 girlfriend /
single		 theoretical highschool / academic road trauma evere incomplete Th1 -/- +/- wheelchair/ wheelchair, walk with rollator
Frank 30–40 married / divorced skilled worker/skilled worker industrial accident severe incomplete L1 -/- -/- wheelchair / wheelchair, walk with sticks
George 30–40 married /married skilled worker/
skilled worker		 industrial accident complete Th4+Th5 -/- +/+ wheelchair/wheelchair
Hank 40–50 married /married unskilled worker/unskilled worker industrial accident complete Th11 -/- -/- Wheelchair / wheelchair
Isabel 40–50 married / married middle-range training/ pensioner fall incomplete C7+Th1 -/+ +/+ wheelchair/ walk, walk with sticks, wheelchair
Kathe 40–50 married / married middle-range training / pensioner road trauma severe incomplete C7+Th1 -/- +/+ wheelchair / wheelchair
Larry 30–40 married / divorced skilled worker/skilledworker road trauma complete Th4 -/- -/- wheelchair/ wheelchair
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1Pseudonym names.

2Age at the time of the accident.

3Civil status at the time of the accident /10 years after.

4Employment at the time of the accident /10 years after.

5Type of accident.

64 weeks after the accident /10 years after.

7+ means normal function.

7– means reduced function.

The participants were interviewed 1, 2, 3, 6, 9 and 12 months and 2, 5 and 10 years after their injury. The interviews lasted approximately one hour and were transcribed verbatim. Each interview opened with the following question, “How are things going?” This allowed the participants to narrate their subjectively experienced everyday lives at the time of the interview. The interview followed the structure of the individual participant's narrative. We used explorative, probing, and follow-up questions and kept asking questions until the participant felt that the experience of living with a damaged spinal cord injury at the time the interview was conducted had been fully narrated. Collecting life experiences along the participants’ trajectories, we wished to find out “how people with a spinal cord injury get on with life”. The vague notion of “getting on” was deliberately chosen to be open to the participants’ lifeworlds. Being open implied taking into account our pre-understanding concerning what would be the outcome of a healing process in terms of coping, rehabilitation, and recovery. Being open also involved reflecting on the appropriateness of talking about “getting on” when life changed due to paralysis. We had to consider whether “getting on” could happen without assuming that life had stalled. And would it be okay to say that life had stalled? This required reflecting on the notion whether life can be stalled while one is still alive. However, “getting on” seemed to capture that activities in life had stopped due to the paralysis and that the participants’ focus had shifted to how paralysis influenced their lives.

2.3. Data analysis

The interviews were read and re-read to explore how the process developed over time and learn what was decisive for living a fulfilled life. Building on Ricoeur's theory (Ricoeur, 1991b, 1991a, 1976), the analytical process contained naïve reading, structural analysis, and critical interpretation of each interview, each participant, and all the participants as a whole. This was undertaken in an effort to comprehend and understand the 10-year process of living with an injured spinal cord. Starting with the naïve reading (a surface interpretation of what was decisive for living a fulfilled life), we obtained an immediate understanding of the meaning of the process as a whole. To verify this understanding, the meaning of each sentence was interpreted on the basis of the whole interview in the structural analysis. In this analysis, we looked at what was said and which explanations were backed by the semantics of the interview data (Barclay et al., 2019). In the subsequent critical interpretation, the most probable of possible interpretations emerged as the result of how the naïve reading and the structural analysis mutually informed the research question (Ricoeur, 1976). The interpretation of what was most decisive for living a fulfilled life was made on the basis of a careful consideration of all included data.

The researcher was always conscious of her own preunderstanding when analysing the data and was open towards what was being said and told (Ricoeur, 1991). The three-level process of text interpretation of what was said and what this could mean ensured that the findings moved beyond the subjective level of the participant and the researcher and thereby created knowledge about how the world could be (Ricoeur, 1991).

2.4. Ethical considerations

The study was conducted in accordance with the Declaration of Helsinki and Danish legislation. It was registered with the Danish Data Protection Agency (registration no 2010–41–4534; 2016–41–4624) and presented to the ethical committee in the former County of Aarhus (21.12.2004). Participants received oral and written information about the study and were informed about confidentiality, anonymity, and that they could withdraw their consent at any time. This information was delivered by nursing staff at an ethically appropriate time. The consent procedure was repeated before every interview.

3. Findings

The longitudinal process showed how people's lives changed from being acutely ill to managing to live a good life despite limitations. During the first two years, focus was on recovering and regaining as much physical function as possible. For some, this entailed being at peace with the current situation while struggling to improve. When bodily improvement stopped, the person had to face the situation and, if possible, get the best out of it. In the situation of struggling to make the best out of life, peoplel sought for new ways of living life with new routines and roles, and they downsized their expectations of life.

The changes that took place in the period from two to five years after having sustained a spinal cord injury included finding new ways of living everyday life. The routines that had become necessary due to the damaged spine became a new normality. So did new roles in relation to the partner, family, friends, work, and surroundings in the sense of the broader social sphere and society in general.

Ten years after the accident had occurred, it was out of focus. Many things had happened since; life went on. Furthermore, the family had also become 10 years older, and relatives were maybe facing health issues themselves. Some had married, others had become divorced, and some were looking for a partner. Children had become young adults, and babies had been born. The main issues in life had become those obstacles from the impairment that prevented them from doing what they wished to do. Still, for everybody, the injured spinal cord influenced their lives. Discomfort due to the damaged spine had become part of life; for some, pain and spasms had become a new normal to which they paid little attention. Others could deal with the pain and spasms by medication or daily activities. However, in some cases, pain and spasms took all the attention. Furthermore, the damaged spinal cord could lead to cystitis or slipped discs, knee pain, or restorative surgery, all of which added painful conditions. For some, other health issues had emerged or their partner had health issues. In both cases, the limitations they encountered due to their spinal cord injury played a comparatively smaller role in their lives

Life 10 years after the spinal cord injury resembled life of other people of the same age, though strain and struggle were integrated parts of every activity and sometimes took focus. Bodily conditions were the most decisive factor for whether life could be lived and fulfilled. When the body took focus in a negative way because of loss of stability and further deteriorated, life was interrupted, sometimes to an extent demanding changes or causing further loss. This is illustrated in three interchangeable life situations.

1. Stable body functions that allow one to focus on other matters

Adapting everyday functions to the current level of ability allowed backgrounding of the impairment, although everything took more time. When the gained ability became the new normal, focus could turn to other matters. This adjustment made some feel able to do almost anything, like Larry, a divorced man, the father of a primary school child:

“There are not many things I cannot do; but I do many things in ways different from the way others do”.

The feeling of being able to do almost anything involved seeing problem-solving as a kind of sport. This implied organising one's life and environment in a way that allowed one to avoid being confronted with one's limitations. In this situation, a partner's well-intentioned tidying up or unintended mess could cause a crisis. This was underscored by Debbie's scolding her beloved husband because she was under pressure to keep up with the tasks of being a housewife and a mother, keeping her body in shape, and managing her job:

“For God's sake, can't you remove all your shit on the bench? Every time I have to sit down to put on my shoes, I am reminded that there is something I cannot do”.

The experience of being able to manage was reinforced by the priority given to activities and matters that had remained possible despite their spinal cord injury. This could include letting go of prior valued activities, realising that they no longer had the same value, or that the loss had become backgrounded. This realisation made space for other things. These other priorities allowed the pain over the lost abilities to become a memory, too.

The problem-solving attitude meant devising new ways of managing things that could no longer be done. This could be storing patio furniture for the winter. Larry handled this task by inviting friends over to have a beer. He related jokingly:

“… then I usually tell them that they must come and put away the furniture for the winter because they were the ones who took it out in the spring; now, they've gotta clear the stuff away again”.

Larry was able to solicit their help because he was able to persuade his friends to help him in return for a beer. Because the body functions were stable, new routines and habits could form. Thereby life could be lived with bodily issues that took time, involved strains, and commanded precaution — without the body being considered a hindrance.

2. Unstable body functions interrupting everyday life

It was a complete shock the first time regained functions were lost again. The loss of regained functions and abilities had not been considered a possibility. Engaging in the rehabilitation process, the situation just after the accident with the ensuing loss of function became the baseline against which any new progress would be measured. In this situation, setbacks were not expected. Therefore, setbacks challenged the individual's confidence in his or her ability to get on with life. The setbacks could be due to cystitis, incontinence, spasm, pain, low blood pressure and dizziness, exhaustion, interrupted sleep, complications like knee damage or disc herniation, or they could be due to recovery from operations — maybe related to restoring functions that had been lost because of the spinal cord injury. These situations took focus away from daily living and were perceived as negative interruptions, even though they would probably last only for a limited period. In these periods, while struggling to become well again, the person felt sick and maybe tormented from doubt whether they would ever recover. These events also evoked fear of growing old because being so weak and dependant when still a younger person left no space for weakening due to old age.

Learning that some of the bodily issues had to be managed by keeping them at bay led to strategies. For example, the experience of increasing pain made George, a self-employed husband and a father of two primary school children, aware that he had to stay physically active and avoid sitting at the office and in meetings for too long.

Physical training was a kind of strategy that served as a means both to continuous improvement and maintenance of the best possible physical shape. Some experienced that if they did not prioritise physical training, they would quickly lose what they had gained; others were motivated by fear of what would happen if they skipped training. Debbie had experienced setbacks several times and struggled to get space for her exercises. She experienced how different her life was if she was in the best possible physical form. Therefore, she did the best she could:

“Now, I attended knee training from 8 to 9 AM this very morning; and then I usually train half an hour on my own and then go to see my physiotherapist from 10 to 10:30, where I was stretched out during individual training, and then I train in a group”.

Even though it took much time from other important parts of her life, like spending more time with her son, she would not be able to enjoy spending this time if experiencing losing her capability. If she lost that, this would influence her ability to engage with him; e.g., by crawling on the floor with him and bending down to him. Thus, the time spent on keeping in shape increased the quality of everything else.

Loss of bodily stability could come suddenly and be due to many factors, even something as common as disturbed night sleep due to turning in bed to avoid pressure sores, emptying the bladder, or incontinence. For Kathe, a married woman and a mother of two young adults, lack of sleep influenced her daily performance, taking time from everyday life that she already perceived to be under pressure.

”I find it difficult to get enough sleep […] my muscles get so tight […]; I have to get out of bed several times during the night; some nights, I sleep only three hours, and then I may have to use a couple of hours during the day to rest”.

However, prioritising physical training could also increase the quality of rest at night.

3. Failing bodily functions hinder living out one's full potential

For some, the level of bodily function did not enable them to live a life allowing them to unfold their full potential. A changed everyday routine could create a kind of isolation. This isolation would arise if it was not possible to maintain one's job and thereby stay in the game and be a natural part of the city's pulse. For some, the challenges in establishing a social life made them retreat into isolation, trying to find joy in a kind of inner peace. Kathe had severe difficulties in finding a satisfying way of being:

”I am about to learn; learn to be me. It probably has something to do with finding that inner peace, you know, because then one simply needs just to try to find that inner peace and listen to oneself rather than just moving on.”

The isolation partly arose because social contacts were no longer an integrated part of her everyday routine. Socialising had become an activity that had to be planned. But time and energy were sparse. Furthermore, training itself sometimes restricted social contact because it took time, focus, and energy. Kathe recognised, with regret, that she had no strength left to do anything else:

”It is also a bit of a sore point because I do not have the extra energy required and I know, I must become better at visiting the friends who are left”.

This awareness revealed determination to change. Therefore, dissatisfaction implied putting pressure on oneself. After 10 years of adaptation, Kathe still struggled to create a fulfilling life. She experienced progress at the same time as she wished that she had made more of her life the past 10 years:

“Psychologically, I think I get better and better for every year that passes; I feel well and want to do many things, but right now it is as if my physical condition keeps me a bit from doing things”.

Thus, the damaged body was an obstacle. Despite regaining many functions after the accident, years of discouraging setbacks and new problems meant that Isabel, a married woman in her late fifties, found that her body could not be trusted; she concluded that the only thing for sure was that the body lets one down. After the first years of appreciation of what she was capable of, her bodily situation worsened due to pain and spasms that could no longer be treated medically. Other diseases appeared and further decreased her capability. In her struggle to deal with limitations and feeling ill, Isabel reached a point where she needed to find satisfaction in the life that could be lived:

”My need is for life to be calm and easy; I no longer crave adventure. I have an entirely different view of myself now, striving to become an honourable elderly lady; I practice that”.

This illustrated the process of reconciling oneself with an identity that matches the possibilities afforded by the impairment while still maintaining dignity. Not being able to live the life she wished for, she went through a process towards wanting to live the life that was possible.

4. Discussion

In recovery from spinal cord injuries, healing of the body has a focal point for healthcare professionals and patients until every opportunity for improvement has been fully exhausted. This point is usually reached within the first or second year after the injury, as seen from Barclay et al.’s (2019) interviews with 17 people 5–29 years after their non-traumatic spinal cord injury. Focus then shifted to compensating for the physical impairment. Compensation could reduce the degree to which physical capacity was limiting, and it allowed the person to resume some lost activities and some measure of participation. During the 10-year period investigated, the search for an acceptable way of living life continued, and any achievements in this regard were appreciated. In some cases, both activity and participation were out of reach, as also reported by Noe et al. (2017). For long periods, this left the person in a devastating situation, searching for a new path. As seen in the present study, it may take time and command much more struggle when manageable activity and possible participation fall to levels that were lower than the usual, valued levels. At some point, some losses were no longer perceived as losses because values had also changed. Other losses would be felt only if the loss was brought to the person's attention. These differences are described in detail in Dorsett (2001); Angel and Kroll (2020, 2012) and Angel (2020).

We found that in participants living 10 years with a damaged spinal cord, reduced body function did not have to hinder persons from living a satisfying life. Although the damaged spinal cord resulted in permanent injury, it did not necessarily have permanent, negative existential and psychosocial consequences, as also reported in earlier studies (Hammell, 2004; Santo-Madeya, 2006; Chen and Boore, 2008). This discrepancy between the actual physical injury and the perceived existential and psychological impact may be due to the time that had passed since the injury. In this period, new values in life had been found and replaced old values associated with activities that were no longer possible. The present study highlights that the course of bodily recovery made a difference; a reduced body function did not have to interfere with pursuing satisfying activities and participation if the bodily situation remained stable and relating to the body did not take all the person's time and energy. Then a new normal could form where the disability backgrounded.

Compensating for bodily ailments could entail satisfaction. However, this could occur only if the person could come to terms with what was possible, and this, in turn, challenged existential values in the worst cases. Coming to terms implies a search for a personal narrative that connects the present to the past, opening for a future that is meaningful (Angel et al., 2009). This was the core issue in the process of getting on with life with impairment, which is, indeed, a long, strained process (Craig et al., 2017; Dorsett, 2001; Angel and Kroll, 2020). In the critical situations of finding their new path, people having suffered spinal cord injury would often be on their own, figuring out how to balance the wished for with the possible. Craig et al. (2017) showed a plethora of important issues during recovery from spinal cord injury. In addition to the spinal cord injury's influence on the self, the person's relation to others, activities, and participation, the very trajectory of life with a damaged spine changed, too (Dorsett, 2001; Barclay et al., 2019; Chen and Boore, 2008).

The existential healing process from the injury happening until a functioning everyday life was re-established may be divided into six phases as described by Angel et al. (2009). In this process, a decisive moment arose if Exploiting limited possibilities in phase 5 did not proceed to Living a life with qualities despite limitations in phase 6. Coming to terms and finding “the satisfying in the possible” could be a long-term process because it involved reconciling oneself with the conflict between what one wished for and what was possible. Indeed, possibilities may have existed, but these possibilities were not necessarily seen as part of a satisfying life as Noe et al. (2017) illustrated by studying two men's different trajectories; one was able to find a satisfying life despite the physical limitations. The other drowned in despair. Satisfaction could be gained by engaging in valued activities that enabled living up to one's potential but also gained by the ability to thrive in one's own company. Unfortunately, this implied downsizing of network and participation. Thus, the stabilised body function allowed the bodily issues to background, but it was still a difficult process to find one's way to balancing possibilities and the life wished for as seen in Angel's (2022) study five years after spinal cord injury. The difficulty of the process underscores the importance of supporting the person's maintenance of the achieved body functions and giving the physique the needed attention.

The person's existential healing described as phase 6: Living a life with qualities despite limitations could occur if the wished for was balanced with the possible. The bodily condition was central to achieving this balance and had to be dealt with. However, when bodily issues were stable, management became routine, which allowed people to focus on other matters. This implied adopting necessary precautions in daily living so as to avoid impediments from taking centre stage. At this level of compensating for bodily ailments, the person had found a new kind of normality with reduced ability, which allowed a satisfying life to be lived. This was probably why people scored higher on quality of life over years (Pretz et al., 2016). However, this new normality was challenged when the need for attention to the body increased. This need could be periodic or permanent due to consequences of the damaged spine or other health issues that became more aggravating as seen in Craig et al. (2017) and Dorsett (2001). In these cases, the process of reconciling oneself by balancing the wished for with the possible repeated itself. This may be one explanation for the apparent non-linearity in a rehabilitation process found by Dorsett (2001).

5. Strength and limitations

Life looks different when looking back. Therefore, studying the course of spinal cord injury in a longitudinal perspective generates more details about the process than a retrospective study of past experiences. In the present longitudinal study, the subjects interviewed were recruited purposefully. The group is hence a selected one comprising those who were available to participate in an interview throughout the entire study period, were not deemed too ill to participate, and did not actively deselect participation themselves due to illness or for other reasons. The purpose of the study was to increase insight into the process of “getting on with life” after spinal cord injury to support the research-based practice of the healthcare professional or social worker. Using Ricoeur's theory to highlight the most decisive factors for living a fulfilled life also means that the present study leaves out other phenomena in the trajectory of life with a spinal cord injury. It also remains to be explored how the present study complements the broader field of disability studies to fully understand well-being as a psychosocial phenomenon.

6. Conclusions

Longitudinal investigation of 10 years of living with spinal cord injury illuminated that recovery from a spinal cord injury happens when wishes can be balanced with possibilities. Reduced body functions did not have to hinder persons from living a satisfying life. Bodily issues can move into the background when new skills and routines are developed and a satisfying way of living life with the impairment can be found. Life can be experienced as good, and it can resemble lives of other people of the same age, though strains and struggles were an integrated part of every activity. This does not change the fact that a spinal cord injury is a lifelong condition. In this situation, being able to let life itself foreground was conditional on bodily issues being stable. When bodily issues took focus and energy, attention to other matters in life was reduced. This added to the person's strained process of reconciling him- or herself with the situation again as balancing the new possible with the wished for became necessary.

Declaration of Competing Interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Acknowledgments

Thank you to the participants for sharing their life situation during 10 years after suffering a spinal cord injury. Furthermore, I take this opportunity to express my gratitude to Associate Professor Morten Pilegaard for editing and proofreading services.

Data availability statement

  • : I have collected my data by qualitative interviews with 10 people during the first 10 years of suffering from spinal cord injury. Unfortunately, the data are not available:

  • •

    The number of people with spinal cord injury in Denmark is limited and, therefore, it is not possible to anonymize data for sharing.

  • •

    Furthermore, I have not got permission from the participants.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

  • : I have collected my data by qualitative interviews with 10 people during the first 10 years of suffering from spinal cord injury. Unfortunately, the data are not available:

  • •

    The number of people with spinal cord injury in Denmark is limited and, therefore, it is not possible to anonymize data for sharing.

  • •

    Furthermore, I have not got permission from the participants.

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