Att återerövra kroppen. En studie av livet efter en ryggmärgsskada

Abstract

Traumatic spinal cord injuries often result in extensive consequences, including paralysis of the muscles from the locus of the injury downwards and a loss of sensation in the same area. The purpose of the present study is to gain understanding of how the relationship between the body and its environment is rebuilt after a spinal cord injury and how patients go about learn-ing to live with a newly altered body. The central questions have been: How is the altered body experienced and integrated into the lived body? How does a person learn to handle an altered body? What does it entail to sustain and live with a spinal cord injury? How does a person with spinal cord injury resume a normal life? The phenomenological life world perspective developed by Merleau-Ponty has been applied. Merleau-Ponty uses the body as the central starting point for his philosophy and has a well-developed body conception comprising both the physical body and consciousness. Thirteen men and four women, some newly injured and others, who had been living with their injuries for a longer period of time, were selected for the investigation in order to represent a broad range of injury duration, age at the time of injury, age at the time of study and type of injury. All participants except two have complete spinal injuries. Interviews, field studies and par-ticipant observation were important in the development of data. Initially the participants did not want to look at or touch the lame parts of their bodies but later on they developed a more positive attitude and their bodies went from being foreign ob-jects to beings with the right to set demands and feel like they are well treated. When the par-ticipants turned their attention towards their injured bodies, they did so with the knowledge that they have no other choice if they want to resume their lives, but at the same time, when doing this, they also learnt to recognise signals about the condition of also the injured body so it may once again become part of the integrated body. This was a unique finding in the inves-tigation. No previous study has demonstrated that people with spinal cord injuries learn to know the paralyzed parts of their bodies by listening to signals from the healthy parts. Living with a spinal cord injury requires planning and patience. An altered body results not only in a changed physical but also social world. A person with a spinal cord injury is con-fronted by other people’s reactions and in their eyes no longer possesses an identity as an equal human being. In order to live in the new situation an ambition was developed to take control over one´s life despite the physical handicap. Other people with spinal injuries were very important here. They assisted in the re-evaluation process and were a source of inspira-tion in what turned out to be an expansion of awareness. This study shows that people with spinal cord injuries can reclaim their bodies and their lives with full human dignity and that disability does not preclude a good life. However, it has also uniquely shown that people with spinal cord injuries learn to know the paralyzed parts of their bodies by listening to signals from the healthy parts. This unique result can lead to further research and challenging new research questions. The insights into how participants have come to terms with their altered bodies and lives can contribute to general knowledge for people with other injuries or diseases and even for people without such disabilities.