EMPIRICAL STUDIES

The incomprehensible injury – interpretations of patients’ narratives concerning experiences with an acute and dramatic spinal cord injury

Vibeke Lohne RNT, MNSc, PhD

The Faculty of Nursing, Oslo University College, Oslo, Norway

Scand J Caring Sci; 2009; 23; 67–75

The incomprehensible injury – interpretations of patients’ narratives concerning experiences with an acute and dramatic spinal cord injury Spinal cord injury is one of the most devastating incidents that can occur to an individual as it results in life being suddenly, dramatically, radically and long lastingly changed. Different studies show that a spinal cord injury is a stressful event, leading to physiological dependence, psychological and social illness and suffering, although the situation tends to improve over time. This study is a part of a larger longitudinal study. The aim of this study was to explore and interpret 10 individuals’ experiences in connection with their acute and unexpected spinal cord injury. This qualitative study has a descriptive and explorativedesign and is a part of a larger study. A phenomenological hermeneutic approach inspired by Ricoeur was used to extract the meaningful content of the patients’ narratives. In this study, the findings revealed three main themes: (I) ‘the incomprehensible shock’, (II) ‘brave survivors’ and (III) ‘miracles, luck or coincidences?’ The incomprehensible spinal cord injury was often experienced as a dramatic and unexpected shock in the middle of a pleasant occasion, and every participant felt immediately overwhelmed byemotional suffering, such as despair and panic, but also anxiety, confusion, sorrow, guilt, shame, fear, aggression or depression at the moment of injury. Some individuals immediately understood that they had become completely paralysed and that something was seriously wrong with their body. Many also experienced guilt or shame because of choices or decisions made immediately before the injury. Several of the narratives were illuminating participants that had been brave survivors and heroes and saved others (passengers or friends) during the injury, by preventing the car form driving out or by softening the fall of co-passengers, which also entailed more serious injuries to themselves. However, the fact of having survived was experienced as ‘being lucky, after all’. They all repeatedly reflected on the accident, and their individual understanding of it changed over time, from, on the whole, as a perspective of a ‘miracle’ to ‘just luck’ or a coincidence’ which also reflected the meaning and significance of what the injury really meant to their body and to their lives. And these reflections gave rise to different ways; they later on learned to live with their new lives. These important aspects, narrated by the brave survivors, have not been reported in the research literature earlier.

Submitted 6 February 2007, Accepted 13 December 2007

Introduction

This paper focuses on experiences at the time of a spinal cord injury, narrated by 10 individuals who survived the injury. Spinal cord injury is one of the most devastating incidents that can occur to an individual and a family (1) and a wide range of difficult and painful emotions are common in such experiences. An injury always happens suddenly, dramatically and unexpectedly to ordinary, normal everyday men and women (2, 3). In an instant, life is radically and long lastingly changed.

The spinal cord is like a cable, connecting the information concerning sensory and muscle function between the body and the brain. The majority of the injuries are compression injuries in which the blood flow to the cord is stopped, thereby causing cell death in the axons (4). The higher the location of a trauma to the spinal cord, the more of the body is disconnected from consciousness. This can include alterations in mobility and in sensitivity as well as in affecting the bowel and bladder, depending on the level of the injury. The individual will experience this impaired mobility and sensory ability from the level of and distal to the injury.

People rarely make a full recovery from the injury. Partial recovery is therefore most common; however, some people make surprising and unpredictable recoveries (2). Nevertheless, most individuals have to face a future of probable complications, requiring a long period of relearning skills (5). Even so, over time, the person will experience the meaning and the significance of what the injury means to their body and to their lives.

Background

Experiences of suffering are some of the most profound conditions in human life and patients who have gone through traumatic injuries followed by major changes are forced to face immediate shock and suffering (6, 7). At the sudden impact of a spinal cord injury, the individual must face experiences of a fatal catastrophe and, if conscious, the surviving victim will have to face a future based more or less dependent on equipment and trained personnel. According to Morse (6) and Morse and O’Brian (8), research on surviving victims is sorely needed. Nevertheless no research papers focusing on patients’ immediate experiences of an acute spinal cord injury have been found. A computer-based literature search was conducted (using CINAHL, Medline) and domestic databases covering the social sciences, health care and nursing. The key words were nursing, rehabilitation, spinal cord-injured patients, acute injury and paralysis, covering the period of the last 10 years.

This paper will focus on patients’ own narratives, spoken with their own words, concerning their individual and common experiences of a sudden incomprehensible and dramatic spinal cord injury. Such experiences will dominate every patient’s individual context of experiences and understanding when starting the process of rehabilitation and will over-shadow every situation for years, following an injury. Additionally, their individual and common understanding of the injury will represent their frame of pre-understanding and will influence future motivation and activity when commencing nursing treatment at the intensive-care unit (ICU). Patients’ experiences following a spinal cord injury entail a critical awareness of their surroundings as well as of surrendering to the care of nurses (8). A severe spinal cord injury affects the whole person and their family, and patients’ personal narratives of the immediate accident, spoken by the victims themselves, are knowledge of great importance to nurses when aiming to understand and care for victims at the ICU or at the rehabilitation centre.

Literature review

The incidence rate of spinal cord injury was approximately 73 (2001) and 58 (2002) in Norway, and was about three times higher for males than females. Spinal cord injuries are also more prevalent in the younger population (1). Some longitudinal studies document the suffering from spinal cord injury over time: health problems, such as pain, loss of strength and endurance, and loss of neural functions were reported by 38–48% of the respondents, on average about 33 years postinjury (9). Furthermore, dependency and lack of control were reported by more than 20%, while 18% reported depression, loneliness and boredom and 15% reported stress. Anxiety and depressive reactions have frequently been noted among individuals suffering from a spinal cord injury (3, 10, 11). These studies show that the consequences of a spinal cord injury are extremely serious and challenging to the patient and the family over a considerable time. On the other hand, the longer the individual had lived with the injury – the fewer problems they experienced, probably because of adapting to the sequel of the injury and developing coping strategies over time (33 years) (9).

Mobility impairments following a spinal cord injury may lead to secondary physical conditions such as contractures and spasms (spasticity) as well as respiratory or urinary tract infections, which are extremely devastating (12, 13). Physical pain is also a common and difficult problem among individuals with spinal cord injuries. It is often unsuccessfully treated and therefore tends to increase over time (14). Even though the pain has a physical component, depression and loneliness have also been related to it. The pain often interferes with daily activities.

Feelings of ‘wheel-chair stigma’ were connected to experiences of feeling unattractive. Furthermore, life in a wheelchair was comprehended as reinforcing feelings of isolation, fears of being alone, being hurt or of falling (13). In addition, the perception of probable barriers to employment resulted in that even those who were motivated to work more than 6 years post-injury remained unemployed (15). These studies show that a spinal cord injury is a stressful event, leading to physiological dependence, psychological and social illness as well as suffering, although the situation tends to prove over time.

Following a spinal cord injury, the patients’ movements and sense of feeling are lost or restricted below the level of injury. Morse and O’Brien (8) developed a four stage model, based on a longitudinal design and unstructured interviews with 19 ‘survivors’ from life-threatening accidents, including patients suffering from spinal cord injury. The purpose was to examine experiences after traumatic injuries of the transformation from being a person, to a victim, to a patient and finally to becoming a disabled person. During the first stage, termed vigilance, the patients experienced overwhelming physiological threats and pathology as well as acute awareness of the surroundings and of surrendering to caregivers. At the next stage, the patients experienced loss of reality in the form of memory gaps, haziness and confusion as well as physiological instability. At stage three, the patients recognised their dependency, realised their disability, and patients with spinal cord injuries hoped for complete recovery. At the same time they learnt to endure the discouragements and setbacks, and started the struggle towards stage 4, where the patients accepted the consequences, modified their future and redefined themselves as a disabled person (8).

On the basis of several empirical studies as well as theories of patients’ responses to illness and injuries (including spinal cord injuries), Morse (6) identified similarities as well as variations in human responses to injuries over time. The synthesising of this information illustrated remarkably congruent and distinct responses which were different from those suffered during chronic experiences and conditions. Her tentative and comprehensive theory consists of five stages: (1) vigilance (when becoming overwhelmed by pain), (2) enduring to survive, (3) enduring to live, (4) experiences of suffering and (5) learning to live with the altered self. According to Morse (6), the most painful phase is stage 3 when the individual has to learn ‘to take it and to bear it’ (p. 29), as well as stage 4 when the person is attempting to make sense of the suffering and despair, following the incident.

When recovering from an injury, Morse (6) found three types of enduring; survival, living or dying. According to Granberg et al. (16), patients on the ICU, after having been critically ill or severely injured, experienced chaos and inner tension. Pain, uncertainty, lack of knowledge, vulnerability and defencelessness, involuntary openness and emptiness were crucial factors involved in experiences of chaos. Furthermore, fear, as an inner state, was always more or less present with all the patients on the ICU and patients reported extreme instability, and emotional loss of control, during the interviews.

Duffy (17) claims that from a comprehensive and a theoretical perspective, experiences of suffering depend on the meaning the individual gives them and that meaning is an attempt to explain what has occurred. Any injury is enshrouded by functional impairments and physical discomforts, and understanding the meaning that patients make of their experiences is a challenge to nurses (18). Regardless of perspective, experiences of suffering can become a learning opportunity and a potential for growth towards complete humanness (7, 19, 20). It can be difficult to differentiate between suffering and pain as they are closely related; even so both are clearly present as phenomena among individuals suffering from a spinal cord injury. Suffering contains aspects of loneliness, despair, hopelessness, shame and fatigue (21), grief caused by loss (7), pain, torment or agony (22) and pain, despair and lack of strength (21). According to research concerning patients who have experienced a trauma (6, 8, 16), it is primarily the loss of everyday abilities that leads to uncertainty, anxiety, depression and pain and thereby experiences of suffering, following an injury or an accident. This individual understanding and experience of impaired mobility and sensory ability occurs at the moment of injury (3).

The study

Aim

The aim of this study was to explore and interpret ten individuals’ experiences concerning their acute and unexpected spinal cord injury, at the time of the incident.

Design

This qualitative study, which is a part of a larger study, has a descriptive and explorative design (23). A phenomenological-hermeneutic approach inspired by Ricoeur (24, 25) was used to extract the meaningful content of the patients’ experiences. The experiences were described in personal narratives during the interviews.

Participants

The subjects consisted of ten patients, selected from a natural setting and through purposeful sampling. Every subject had experienced a sudden, dramatic and serious spinal cord injury. Patients were included in the present study according to the following criteria: Diagnosed spinal cord injury, over 20 years of age, newly admitted to the rehabilitation centre, mentally orientated and lucid, voluntary participation (written and verbal consent) and ability to speak a Scandinavian language. On the basis of these criteria, two ward nurses asked 14 patients recently admitted to the rehabilitation centre (from 6 weeks to 4 months after the injury) to participate in this study. Four patients declined to take part in the investigation. The patients were guaranteed anonymity and integrity. All patients received both verbal and written information about the study and their written consent to participate was obtained. The study was approved by The Norwegian Ethics Committee (no. S-01093) and the Norwegian Social Science Data Services (no. 8368).

The patients (six men and four women) were aged between 22 and 76 years. Two patients had inner vascular damage while the reminder had external injuries resulting from traffic- accidents or serious injuries from falls. Four patients had symptoms that indicated complete spinal cord damage, while six were incompletely paralysed. The level of the lesions was between C5–L4 (fifth cervical to fourth lumbar level).

Data collection

Data were mainly collected using personal interviews at the rehabilitation centre during the late autumn of 2001 (I*). At the other interview, about a year later [during the late autumn 2002 (II*), at the respondents’ home], some of the participants gave more explicit narratives from the time of incident. This study is a part of a larger prospective study, focusing on patient’s experiences of hope during the first 3.5 years postinjury (3, 26–29). A personal interview is a voluntary conversation between the investigator and the respondents, and the study was conducted on a voluntarily basis. All interviews were conducted by the author and had an average duration of 60 minutes. The interviews were audio-taped and transcribed by the investigator and author. The main questions to the patients in this study were open and concerned the past event (the accident or injury): like ‘what has happened to you and why are you here at the rehabilitation centre’? Depending on the patients’ answers, additional questions were asked by the interviewer to clarify the information. The interviews focused on each participant’s experiences of the sudden and serious accident. The meaning of the situation described formed the narratives.

The context

According to Eriksson and Lindstro¨m (30), contextual variables contain two different aspects; inner coherence and external variables such as the environment and external framework. With regard to external variables, the rehabilitation centre was situated on the coast of Norway, and had a fantastic view of the sea. The patient’s future lives are dependent on the progress made in the rehabilitation programme offered at the centre. The context also illustrates the coherence of the situation. The patients’ inner contexts were contained within their experiences of suffering, from the time of their sudden and unexpected injury (the past), to present problems and prospects.

Data analysis

The purpose of the data analysis was to extract the meaning from the content of the patients’ experiences of the injury, based on the narratives from the participants. An interpretation is a circular process that moves back and forth, from parts of the text to the text as a whole and back again, applying new questions to the text and the informants’ answers.

To achieve distanciation, the interpreter should approach the text without concern for the author (research participant) (25), and focus moves from the research participant’s individual intentions and meanings to the meaning of the text. During this process of understanding, the text is freed from its originally context and given a life of its own.

In the beginning of my study, understanding was based on supposition, as the same sentence could be understood in different ways. According to Ricoeur (25) one-sidedness is always implied in the act of reading. The first step, the naı¨ve reading, involved reading the transcripts as a story, while the second step involved a number of structural analyses, carried out as key statements and themes. Usually, at this stage, interpretative meanings are catalogued by using words that participants have used themselves. Then, every interpretation was checked and compared with the whole text again. At this point, because of textual plurality interpretations only reflected my understanding at that point in time. Now the challenge was to identify central essences and units of meaning, to grasp the most probable interpretation of parts of the texts. Ricoeur (25) describes this as textual plurivocity. At this level, the text opened up to de-contextuality in the analytical-interpretative process and the whole appeared in a hierarchy of topics with different levels of abstraction. The aim of the third step was to make a comprehensive and understandable interpretation of the whole text, based on the naı¨ve reading and the structural analysis (24, 25). At this level I searched for theoretical understanding and reflections as well as my own contextual reflections and pre-understandings. This process of interpretation deepened the understanding of the patients’ experiences.

Findings and interpretations

The sudden and dramatic spinal cord injury was experienced by the participants in different ways, although certain aspects of the incident were comprehended as common and essential unavoidable. Both common as well as individual experiences are highlighted in this section. In this study the findings revealed three main themes: (I) ‘the incomprehensible shock, (II) ‘brave survivors’ and (III) ‘miracles, luck or coincidences?’ These main themes will be presented in the following and validated by quotations.

Theme I: the incomprehensible shock

The spinal cord injury was experienced as incomprehensible shock, meaning a sudden and dramatic incident: for one participant, it suddenly happened in the middle of a ‘nice celebration at a 70th birthday party’ (A, male, 61 years old, p. 3, I*) and for another while driving home:

from a disco with my boy friend. One guy wanted to drive us home, but suddenly he had an indisposition and he fainted – without us noticing it…and…whenI suddenly realised that the car was headed towards those guard stones along the road…I tried to get in front to help him…but I couldn’t reach and we suddenly hit the guard stones…(C, female, 22 years old p 36, I)

Another participant was travelling to work in the morning, as usual, ‘…and it was slippery, very slippery,…and the car skidded right across the road and continued straight into the scenery…’ (H, male, 66 years old, p. 193, I). One man had a spill on a motor bike, ‘while cruising with close friends on a nice calm day’ (B, male, 43 years old, p.222, II*).

Two participants fell from a veranda during a party. One of them, a female of 22 years, experienced the most incomprehensible incident of her life.

Well, we went down town and I met this diver pal…and we went to my home and later on we were sitting on my balcony…and I was sitting on the edge of the railing…which I have done a thousand times before…and he is standing in front of me, and then, I think that I suddenly lost my balance…and we fell, the both of us, with me at the bottom,…I don’t remember… (G, female, 22 years old, p. 163, I)

Another participant, 22-year old male, at a birthday party had also to face an incomprehensible shock:

…well, I fell from the veranda…early in the morning, I don’t know, you know, I did exactly as I ‘d done before…standing straight up, and then I just lifted my body and hung there, but this time I just fell…I just meant to stretch my back…but I felt something like jelly on the railing…and I suddenly slipped forwards. (F, p. 139–140, I)

Immediately following the dramatic spinal cord injury,every participant in this study was overwhelmed by emotional suffering, such as despair and panic, anxiety, confusion, sorrow, guilt, shame, fear, aggression or depression. One of the first thoughts that went through the mind of a young woman of 22 was like a reply in an American movie: ‘I can’t move my legs’ (G, p. 165, I). This sentence immediately flew through her head shortly after a fall from a veranda. At the precise moment she hit the ground, this young woman knew that she had become completely paralysed: ‘…in my back, I felt like something had happened and I was totally…couldn’t move my legs…’ (G, p. 165, I) and she saw herself as participating in a dramatic movie, imagining the wheel-chair in the back-ground: ‘I was absolutely sure that I was about to be paralysed…which was the absolute night-mare, you see…’ (G, p. 164, I).

Another young girl asked her boyfriend to remove her legs from the car immediately following the injury, because she was in pain. I remember everything from the car-accident…and suddenly I panicked…or more like claustrophobia…I removed the seat belt and crawled out on my arms…and I just told my boyfriend to remove my legs (out of the car) and then…my boyfriend answered that they are already outside… (C, p. 36, I) His answer made her suddenly realise that something was dramatically and seriously wrong with her legs and she felt an immediate sorrow.

Many participants also experienced guilt and shame, because of choices and decisions made immediately before the injury, for example the speed of the car or the amount of alcohol partaken, while others regretted leaning or sitting on the railing of the veranda (G and H). One participant had jumped in panic and despair in an effort to try to escape an impossible family situation (J, female, 25 years of age) and shortly following the fall deeply regretted this act of despair.

Theme II: brave survivors

Immediately before and during the injury several of the participants in the study had acted like heroes or saints. One participant tried to control the car when the driver lost consciousness (C), and because of this twisted position she was the only one in the car that was injured. Another participant, a sportsman (E) who participated in extreme sports saved his passenger with an airbag when they lost height:

so he was not injured…but eh mine (the air-bag) was not working…and then we banged into the ground…I think that we fell from about 24 meters, more or less…and eh, mine didn’t work, but his (air-bag) worked one hundred percent, so he was discharged (from the hospital) the same day while I ended here…this is…eh…relatively dramatic, I would say…(E, p. 92, I)

Another participant landed on the ground with her boyfriend on top of her: …and I hit a stone, the middle of a stone…it was about three meters down, I think…and I got his weight as well, upon me…and that was about 65 kilos or more…and at that speed, those kilos weigh much more… (G, p. 163, I)

Of the three who were injured in the company of others (C, E and G) all of them were both saints and heroes as they had saved others; for example by preventing the car from driving out at the curve of the road (and therefore saving the other passengers) or by softening the fall of a co-passenger – and therefore experiencing greater and more serious injuries themselves.

As a result of the amount of general knowledge regarding head injuries in the general public, all the participants were fully aware of the importance of not being moved before the ambulance arrived: Well, I was conscious, and he wanted to carry me up, but I became very angry and told him not to touch me because I knew…at the same time as I hit the ground…I knew…I was absolutely sure that I was about to be paralysed… (G, p. 163–164, I) In spite of this, a young man who fell during a party, experienced being turned over:

Three metres…and I almost did not loose consciousness at all…just a minute or so…I just remember that there was one that…ran out and he turned me around…and I am not sure that this was very smart of him, but…my whole body was stiff and I was in no pain…so suddenly I lay on my back and I could not move myself…I couldn’t move a finger…so I was stuck…and then suddenly everybody came down…and I heard them panicking…and my blood was flowing…and everybody was drunk…and suddenly I felt cold and calm, you know…and you just call an ambulance…and then the police came…they came before the ambulance… (F, p. 140, I)

Also another man who fell during a celebration party: …and finally they found me down on a slope and they called 113 and asked what to do, and were told not to move me and not to do anything, just to find a blanket or a duvet to protect me from the cold…(A, p. 3, I)

Every participant experienced suddenly, in the space of moment, an everlasting voyage between different existential dimensions of life – from the existence of being healthy and able to move to suddenly becoming a paralysed victim.

Theme III: miracles, luck or coincidences?

The participants’ experiences pendulated between an understanding of having been visited by a miracle or by a coincidence and this was reflected in the meaning and significance of what the injury really meant to their body and to their lives:

Is this a coincidence or is this a signal or should I…eh stop to live my good life…because maybe I haven’t gone deep enough into it (life)…if not…if I hadn’t become a therapist, then I would have…I don’t know…or is it only a coincidence…just what it is…well this depends on what you believe, right? Well, actually I really believe that there are some signals here…I must say so, because I find it conspicuous that this should happen, and…in a way one could say that I think I had reached a point of too much fun and games and ‘the good life’…and a bit too much travelling and amore and those things… (E, p. 115, I)

This participant, who was hit for 5 seconds by an extraordinary light gust of wind and which threw him and his passenger straight down into the ground, constantly reflected over the meaning of his physically chaos. As he was searching for possible explanations, he also reflected over the different choices he had made and the direction of his life: ‘…and we can see eh how life suddenly catches up with you and maybe changes, in a way…(E, p. 120, I)’.

Later on, he was even more thoughtful regarding these questions: some wonders how there can be a God since there is so much cruelty in the world…and how can God accept all the killing and Hitler and…and one ends up with thoughts like eh… this happens anyway… and that life is both good and evil…and your only choice is either to see the depressive aspects of life, or you can focus on what possibilities you are given, after all…(E, p. 11, II)

Such existential ‘life perspectives’ may reduce individual experiences of personal responsibility and guilt. Another young man, who suffered a serious fall, was told that:

I was only millimetres from a brain injury or from death…and my neck was broken…it was a real mess…I don’t understand why I wasn’t even more hurt because one vertebrae was totally broken, right…and two others had collapsed…that my spinal cord is still complete is a real miracle, so I have been really lucky…still it seems like a coincidence…I don’t believe in supernatural forces…and I have suffered great losses but I have gained much more than I have lost, since I was so lucky, after all… (F, p. 60–61, II)

A spinal cord injury, from this perspective, gives many reasons for reflecting over life in general, and personal suffering especially. For this young man, coincidences and luck are seen in relief to personal destiny and fate. A 22-year-old woman, shortly following her spinal cord injury, reflected over life and viewed it as a learning-process in a spiritual perspective:

Well, previously, I think I believed in things that I might have overlooked in my earlier life…because I always refer to my life. as before the accident (injury) or my life after the accident…because these are two very different things…but eh I don’t believe in such things anymore, I only think that things happen…either you find yourself at the right place and at the right time, or you find yourself at the wrong place at the wrong time…and this is just how it works,…like a floating river dividing into different directions, and it just happens. But it might be caused by destiny, though still I don’t believe there’s any specific reason why this should happen to me… (G, p. 234, II)

When reflecting upon this, this young woman comprehended the injury as either a ‘happening’ or as a destiny, but she finally interpreted it as a coinicidence: ‘But I believe in destiny’ said a man of 61 years, ‘and I believe that everybody has got their share of time here on earth…and this has been decided long before we are born…including my spinal cord injury…and I feel quite sure about this…’ (A, p 15, I)

Another participant, a 46-year-old man, who after having overturned with his motor bike, alternated between believing in faith or in coincidence: This injury is difficult to understand since I didn’t drive fast...no, often it seems like coincidence (to me)…but my time had probably not come yet, for if I had overturned at another time it could have been worse, and there could have been nothing left to care for, not my legs nor the rest of my body… (B, p. 221, II).

From a protracted perspective, several felt both lucky and unlucky, having been through such a dramatic and seriously incident, because of conditions like ‘being survivors after all’ (B, E, F and J): ‘I already had one leg in the grave… (F, p. 143) ‘…I had a fifty-fifty percent chance of not surviving this injury…’ (F, p. 156) …and according to the physicians, ‘I was only a millimetre from a severe brain injury, you see…’ (F, p.60, II). Experiences of luck were comprehended as because of ‘a lower speed than usual’ (B, p. 221, II) or ‘suffering from a physically limited injury, after all…’ (C, E and G); having ‘had ambulance personal in the car behind which contributed to quick medical treatment’ (H, p. 193–194, I) or ‘being drunk makes you more relaxed…and you fall like a ‘lump’…just like a child…’ (A, p. 16, I). In a more general sense, several praised destiny (fate) for still being alive, and in a way several also felt, lucky – after all – because it could have been worse.

These reflections illustrate the processes of reconciliation following a serious turning-point in life, namely a spinal cord injury. For some individuals, this incomprehensible injury seemed to have been destined – for others it seemed to be a coincidence. The different ways in which the individuals understood their experiences give rise to the different ways they later on learned to live with their new lives.

Discussion

This study is a part of a larger longitudinal study. The aim of this study was to increase understanding of how victims from a sudden and critical spinal cord injury comprehended and narrated their injury at its’ moment of occurrence and the following weeks or months. A phenomenological-hermeneutic approach, inspired by Ricoeur (24) was used to extract the meaning from the content of the patients’ experiences. The inclusion criteria were open, only excluding patients under 20 years of age and those with serious additional injuries. Fourteen patients fulfilled the inclusion criteria, while 10 patients were willing to share their experiences over time. An important aspect is the validity and credibility of the study. Efforts were made to establish a trusting and deep relationship between the patients and the interviewer, from the first introduction to the following interviews. There is, however, always a risk that the researcher is selective, even when quotations are referred in the text, to validate the findings. In this study, the researchers’ pre-understanding has been reflected upon in detail. The author has also a considerable number of years of professional and research experience within the acute and critical aspects of patients’ suffering after a spinal cord injury.

The findings resulted in three main interpretations: ‘The incomprehensible shock’, ‘Brave survivors’ and ‘Miracles, luck or coincidences?’ Research on surviving victims is greatly needed, especially in nursing science, where patients’ frame of reference determines the patients’ inner comprehension on arrival at the nursing ICU. According to the four stage model of Morse and O’Brien (8), based on a longitudinal design of 19 ‘survivors’ from life-threatening accidents, including patients suffering from spinal cord injury, every survivor moved from being a person, to becoming a victim, to becoming a patient and finally to becoming a disabled person. The different steps were: at stage 1, vigilance, the patients experienced overwhelming physiological threats and pathology as well as increased awareness of the surroundings. Aspects of extreme vigilance, could also be identified in the narratives of the participants in this study; and were also demonstrated at the precise moment of the injury, and several participants refused to be moved from the place of the incident before the ambulance arrived, after which they surrendered to health-care personnel. Interpretation of the narratives show that participants also experienced sudden and overwhelming emotions at the time of incident, such as despair and panic, anxiety, confusion, sorrow, guilt, shame, fear, aggression or depression, which has not been identified in the literature as yet. At stage 2, the patients experienced loss of reality such as memory gaps, haziness and confusion as well as physiological instability (on the ICU) and finally at stage 3, the patients recognised their dependence and realised their disability(8). However, in this study, most participants were aware of the injury immediately and identified it as feeling removed from parts of the body or trapped at the place of the incident, as well as some dramatic and possible future consequences, exemplified as the wheelchair. The participants in this study also learned to adapt to the injury, while the narratives from the time of injury carry messages of a common and immediate understanding of the lack of mobility (the paralysis) among the injured survivors.

Some years later Morse (6) identified a five stage theory:(1) Vigilance (meaning overwhelmed by pain), (2) enduring to survive, (3) enduring to live, (4) experiences of suffering and (5) learning to live with the altered self. The narratives presented in this study, focusing on the participants’ immediate experiences of a spinal cord injury, indicate that the participants were more or less in transition between the first and second stages. They were, in other words, fighting for life during the critically, unstable, unpredictable and painful hours and days following the incomprehensible injury, by, for example, refusing to be moved from the place of incident. Findings in this study also revealed that the participants, weeks later, reflected on the fact that they had survived – within the perspective of miracles, luck or coincidence. Granberg et al. (16) found experiences of chaos, inner tension, uncertainty, lack of knowledge, vulnerability, defencelessness, involuntary openness and emptiness at the ICU, and also the presence of fear, extreme instability, and emotional loss of control. In this study, several of the same emotional experiences were identified, such as panic, anxiety and confusion (understood as expressions of emotional loss of control). Additionally, in this study, through the interpretation of the narratives, emotional experiences, such as sorrow, guilt, shame, aggression and depression were also understood as essential features of the participants’ experiences.

Interpretations are probable truths, according to Ricoeur (25), and several other interpretations may also be possible. In this study, the focus was on the immediate experiences of being paralysed, as a context for understanding the patient arriving at the ICU, while Granberg et al. (16) focus on the 36 hours of hospitalisation on the ICU. This study also highlights some reflections on experiences of becoming a victim. At the same time, some participants who had shown the will and ability to sacrifice their own security when they had saved other passengers at the moment of injury, were understood as being brave or heroes.

According to Duffy (17), experiences of suffering are dependant on the meaning the individuals’ place on the incident. All the participants were constantly reflecting upon what had happened as well as why it had happened to them. Narratives related to this aspect of the experiences resulted in interpretations pointing to a miracle or coincidences: several of the brave survivors believed that the spinal cord injury was a result of determinism, while others explained the incident as their having been lucky or unlucky, which also reflected the meaning and significance of what the injury really meant to their body and to their lives. The participants’ comprehensive and overall understanding changed over time and to some survivors, the experience of a miracle shortly following the injury was replaced by an experience of coincidence weeks or months later. These important aspects, narrated by the brave survivors, have not been reported in the research literature earlier. According to Zafon (31), coincidences are the scars of the destiny (p. 431).

Conclusion

This study focuses on the immediate experiences, shortly following a spinal cord injury. The sudden and totally incomprehensible spinal cord injury was often experienced as a dramatic and unexpected shock in the middle of a party or a pleasant excursion. The injury led immediately to emotional suffering, such as despair and panic, anxiety, confusion, sorrow, guilt, shame, fear, aggression or depression among the patients. At the same time, several had been brave survivors and saved others (passengers or friends). The fact of having survived was experienced as ‘being lucky, after all’, shortly following the injury by the participants. They all repeatedly reflected on the ‘how’ and the ‘why’ of the accident, and their individual understanding of it changed over time, from, on the whole, a perspective of a miracle’ to ‘just a coincidence’ or a happening. And these reflections gave rise to the different ways they later on learned to live with their new lives. Most participants felt more vulnerable in their radically changed lives than they had before the injury. This increased the burden of being a victim and survivor of a spinal cord injury.

Acknowledgements

The author wishes to thank the patients for their generous and whole-hearted contribution to this study. The author also wishes to thank Hilary Jacobsen for reviewing the English. The Faculty of Nursing, Oslo University College, supported this study.

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