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Authors

  1. Young-Mason, Jeanine EdD, RN, CS, FAAN

Article Content

What is pain? Many illnesses result in pain-so is pain an illness?

 

-Greg Lum

 

I have been haunted for a very long time by Greg Lum's piercing narrative about the spiritual and psychological exile he descended into after an accident irrevocably altered his life. There was life before the accident and life after. His life before was full of promise and the enjoyment of the culture of theater and music with his friends. He was writing his PhD dissertation on dramatic adaptations of classical works of literature. His life after the accident was centered on attempts to find relief from severe and constant pain. On his journey to find relief, he encountered healthcare providers who insisted that he was getting something out of being in pain, others who withheld medication until he "begged" essentially blaming him for his afflictions just as "Job's friends blamed him for his." He found some measure of control over his life when he began going to a pain clinic and exercising more regularly. "I see that I can have some say and can take a more active role in dealing with the symptoms even if no one else can determine what's wrong with me. But what I don't need is psychobabble on top of trying to cope with pain." Lum describes the problematic effects of pain and antidepressant medications on his cognition. He is angered by the burden of guilt imposed upon him by those who could not diagnose the sources of pain throughout his body. And then there is the sadness that he is unable to finish his dissertation.

 

"I suspect that what or who I am is decided by what kind of pain, and how much pain I'm in. I can no longer remember a time when I wasn't in pain. The last 7 years have pretty much become fused and fuzzy and have overwhelmed any memories of my life before this intense, chronic pain that has changed my life to an existence. I can recall only colorless memories of what I've done in the past, such as traveling, living, and studying abroad, but I can't remember what they felt like because pain filters and interferes with even my memories. I can't call up memories of physical activities. For instance, I can recall going to the Come[spacing acute]die Francaise, but I can't remember actually sitting through Le Bourgeois Gentilhomme for however long it lasts and recalling how it felt to be so caught up in the play that I'd forget myself, because if I try, all I can call up is how painful it would be now to even go to such an event. (I angered my neighboring spectators at the last play I saw because I couldn't sit still.)."1

 

Living with severe and chronic pain can be a life lived in exile. Greg Lum's life after his accident echoes Sophocles' Philoctetes, who was abandoned on an uninhabited island after being crippled by a wound that would not heal. His incessant cries of agony and complaint and the malodorous wound were unbearable to his comrades in the Greek Army. Certain encounters that Greg Lum experienced with healthcare "providers" left him overwhelmed with anger and sense of abandonment. At times it seemed as though no one knew what to do or how to help him. He was blamed for causing his own constant pain or getting something out of being in pain, essentially intimating that he was making himself a victim. Some were filled with genuine concern for Greg but were frightened and overcome by the depth of his suffering, unable to find a way to ease his afflictions. We can understand Philoctetes' cry: "Do not in fear forsake me."2

 

Where is the just care for the abandoned sufferer? Where is the compassion? This is not to say that care for people living with chronic pain has not improved since the 1990s because it has vastly improved. Noteworthy programs and pain clinics exist throughout the United States and elsewhere. An investigative study conducted in the United Kingdom, "An Evaluation of a Literature-Based Intervention for People Living With Chronic Pain,"3 holds much promise, I believe, as an intervention for people enduring severe and chronic pain. This study looked at whether shared reading as a literature-based intervention was beneficial for people with chronic pain when delivered in a clinical setting. It is a multidisciplinary study partnering The Reader Organization, Centre for Research into Reading, Information and Linguistic Systems University of Liverpool, the School of Health Sciences, University of Liverpool, and the Pain Clinic Royal Liverpool University Hospitals NHS Trust. (The full report can be downloaded in pdf format. http://www.thereader.org.uk/media/931461/ReadingandChronicPainFinalReport.pdf.)

 

Participants with severe and chronic pain were recruited from a local NHS Trust pain clinic to a single "Get Into Reading" group held within a hospital and run by a project worked trained by The Reader Organization. Get Into Reading is a weekly read-aloud activity, developed by The Reader Organization3 focusing on the shared reading and discussion of literary texts (novels, poems, short stories.)

 

The Get Into Reading model, the specific literature-based intervention evaluated in the present study, is distinguished from other reading therapies (which characteristically rely on "self-help" books) in emphasizing the importance of serious, "classic" literature and its role in offering a model of human thinking and feeling, reading such works aloud so that the book is a live presence and not just an object of study or chat.4

 

The Reader Organization's trained project workers deliver the intervention. Project workers attend bespoke Read to Lead training, which grounds them in the necessary skills and understanding of shared reading facilitation. The customized readings utilized in this study are listed in the appendix of the research report.

 

An Examination of the Qualitative Data Is Illuminating

Analysis of qualitative data from the personal accounts focus group and project worker's account has illuminated common themes in relation to the Get Into Reading experience for people with chronic pain and the impact that attending has had on their daily lives. (Focus group and individual interview data are recorded in the study as are quantitative data.)4

 

The Value of the Literature Read

The literature was regarded as an essential component of the Get Into Reading experience. Not Self-help. It was universally felt by participants that the cohesion and comradeship, joy and animation, and the sense of anticipation, excitement, and inquiry, which characterized the experience, were generated by the shared reading of the literature and that a self-help or support group that concentrated exclusively on pain issues would not have had the same impact or benefits. The skill of the project worker-in choosing the literature, in bringing it to life through her reading and comments, and in managing the group discussion-was also thought to be critical to the quality of the experience.4

 

Absorbed Concentration

All participants showed a preference for more challenging texts as the difficult stories and poems made them think more deeply. Both group members and project worker agreed that reading and puzzling together over the meaning of an intellectually and emotionally demanding literary piece produced closer concentration and absorbed attention to details of language and reduced awareness of pain. It appeared the more participants were focused on thinking about the narrative and literary aspects of stories or poems, the less they were affected by their pain or the more distanced from it they became. It was a thought the extra mental effort helped shift immersion to another level and blocked out the pain more successfully.4

 

Diversity

The variety of poems and stories, as well as the potential for an inexhaustible range of subject rather than "pain" centered, was welcomed. Differences of view were also valued, and the opportunity to express individual ideas helped engender a sense of self-worth, as did the sharing of previously unread "classic" authors. The introduction to new literary material also influenced reading habits outside the group, particularly the nature and range of reading matter (books were replacing newspapers, magazines, and television). Individual accounts demonstrated how the challenge of working with the literature as part of a team helped to recreate elements of previous occupational lives. Connections were made to former work-based skills, and there was a renewed recognition of the need to engage in valued and meaningful activity.4

 

Flow

It appeared that within the group setting that the mental challenge of the shared reading created a state consistent with the concept of "flow," which occurs when presented with a just-right challenge. In this optimal state, people can also lose awareness of their physical needs and bodily state, becoming more fully themselves-more fulfilled and absorbed, more vitally alive-in forgetting the self, while engaged in meaningful activity. This paradigm concurs with participants reduced awareness of pain during the group session and with the project worker's skill in providing the appropriate high-level literary challenge each week. This approach is in contrast to a graded one that may often be utilized by therapists, where the difficulty of the challenge is increased in a stepwise fashion, starting with a low-grade challenge and progressing to a demanding one. In this case, the inexhaustible fund of literary resources ensured the "just-right" challenge could always be tailored to need, while participants reported that it was the intrinsic interest of the literature, which made the challenge more effective for pain relief than a stepped program.4

 

A Sense of Shared Community, Friendship, and Comradeship

While the literature was core to the experience, all participants also recognized the group's sense of community had on their mood and pain and the contribution made by the sharing of literary meaning to their feeling of comradeship. Connections with each other were deeply felt by participants, rooted in genuine regard and playing an important part of everyone's week. Participants encouraged each other and took delight in others' progress, both inside and outside the group where some met socially. All participants agreed that the group had been beneficial in terms of coping with pain and had helped overcome the social isolation caused by their associated depression. Social connectedness appeared to run on many levels with emotional, informational, tangible, and companionship strands evident in participants' conversation, in contrast to the emphasis in individual accounts of feeling isolated and lonely as a result of suffering pain and the consequent loss of occupational roles. These benefits rippled out into other relationships as participants shared the reading from the groups with spouses and neighbors. The term community was acknowledged by participants as more closely fitting their experience than social support.4

 

Mood and Quality of Life

The shared reading aloud countered the negative effect of pain on the participant's mood, both by helping to overcome isolation and depression of spirits and by encouraging engaged enjoyment and attentive (listening) relaxation. Changes in quality of life were also widely agreed upon by all participants and associated with ripple-out effects from the group. The form of such changes varied somewhat, with participants referring to changes in their exercise levels, the rekindling of previously valued occupations and leisure activities, and alterations in pain-coping strategies. The importance of having a meaningful focus to the week emerged strongly, and the value that came from the change of routine and sense of occasion engendered by attending the group was reflected in a markedly increased attention to appearance in both men and women. Participants were also very keen to take the reading material away with them and share it with others. The literature gave people another way of socializing and conversing-a sort to currency-that came out of a part of themselves that had nothing to do with the fact that they were chronic pain sufferers and in which they could take pride. A further unexpected impact on quality of life that emerged was the exercise involved in getting to the group. Not only were participants making the effort to get dressed, but also some chose to walk to the group from home or the car park in order to deliberately increase their exercise, reporting physical and psychological benefits of invigoration and contentment.4

 

References

 

1. Lum G. Prisoner of pain. In: Young-Mason J. The Patient's Voice: Experiences of Illness.1st ed. Philadelphia, PA: FA Davis Publishers; 1997: 69. [Context Link]

 

2. Sophokles. Sophocles. Translated by McNamee G. Port Townsend, WA: Copper Canyon Press; 1986: 4. [Context Link]

 

3. The Reader Organization. Enhancing the lives of people living with dementia. http://www.thereader.org.uk. The Reader Organization was highlighted in this column January/February 2015. Accessed November 22, 2015. [Context Link]

 

4. Billington J, Humphreys A-L, McDonnell K, Jones A. An evaluation of a literature-based intervention for people living with chronic pain. 2014. http://www.thereader.org.uk/what-we-do-and-why/research.aspx. (Full report of evaluation in pdf format http://www.thereader.org.uk/media/93146/ReadingandChronicPainFinalReport.pdf). Accessed November 22, 2015. [Context Link]