Brain Injury Survivors: Narratives of Rehabilitation and Healing Laura Lorenz, Lynne Rienner Publishers Page 9 of 10

The experience of “the restoration of coherence” occurs both in the “act” of taking photographs and in “the contemplation of the image by others” (Radley 2002:11).When we as viewers contemplate Peggi’s narrative — her images and their interview excerpts — we participate in creating “existential meaning” about living with brain injury (Debats 2000:95). Peggi’s narrative provides both viewer and creator an opportunity to “see” Peggi’s brain injury world and gain a new perspective on the pain and struggles she describes so well. Reading Peggi’s narrative of darkness and light helps us to develop with Peggi a shared understanding of life with brain injury as she experiences it (Pollack 2005).

Emotional sharing of experience using symbols, concepts, and analogies is healing and can contribute to “reestablishment of the injured person’s sense of self” (Pollack 2005:644). Peggi’s narrative provides both viewer and creator an opportunity to feel and to “restore . . . the capacity to feel” (Radley 2002:21). Her narrative “instantiates” or provides a concrete example of her feelings (2002:18). In viewing her narrative, the creator and her audience develop a “shared comprehension” (2002:21).

Peggi’s visual illness narrative shows how she is living with illness (Radley 2002). Its excerpts depict how she feels about the loss of her old self and the gradual birth of her new self. In Excerpt 1, Peggi shows us that living with her brain injury can mean feeling trapped inside a dark place, looking up and out at a world of “light and blue sunny skies.” By the fifth excerpt, Peggi appears to have emerged, along with her brain injury, out of the “shadows.” The natural (tree) and man-made (street lamp) elements in her final excerpt portray Peggi’s struggle with the “emotional” (natural) aspects of her new life while relying on medications (man-made elements), without which she “could not stand.” Peggi employs both natural and man-made elements in negotiating a balance in her life, literally and metaphorically, between darkness and light.

Peggi’s narrative of darkness and light appears to show that she has emerged from the despair and isolation of her early years living with brain injury. She no longer hibernates in her room. She engages with the world and her injury by attending support group meetings, babysitting, and volunteering at her son’s school. Peggi is not entirely reconciled with her new world of “incongruity” and gray skies. She continues her struggle to encompass darkness and light in a self that embraces both the “old” and the “new.”

Darkness and Light: A Researcher’s Perspective

Reflecting on Peggi’s experience as an example of a disrupted life, in which “expectations about the course of life are not met, [and] people experience inner chaos and disruption” (Becker 1997:4), forced me to reflect on my own experiences of disruption. The most obvious is divorce, which suddenly and involuntarily prompted me to leave overseas work and the nest of a nuclear family, to return to a now-alien US culture where I became a single parent working full-time. I spent years grieving for the loss of that family and way of life. Certain events, such as the birth of a grandchild, trigger echoes of that grief today.

Over time I stopped cursing the death of my “old” self and started feeling grateful for the birth of my “new” one. The change led me to find meaningful work and a renewed purpose in life, and to “understand how events in [my] life fit into a larger context” (Reker and Chamberlain 2000:1). It is difficult to imagine facing such a life-changing disruption while wrestling with the cognitive, physical, and emotional impacts of brain injury.

Researchers and practitioners alike argue that the cognitive and emotional impairments brought on by brain injury increase the urgency and the value of providing opportunities for brain injury survivors to explore their experience and find new meaning in life (Pollack 2005; Chamberlain 2006; Nochi 1998; Prigatano 1989).At a conference on community integration of persons with traumatic brain injury inApril 2007, lifespan developmental psychologist Gary Reker noted, “meaning is a very personal, subjective, private issue.When it comes to intervention ‘One size does not fit all.’” After viewing a conference poster on the photovoice project with brain injury survivors, Reker (2007) suggested that the sharing of visual “stories” in a group environment can “facilitate personal understanding” of brain injury “as well as validation by others in a similar situation.”

Are visual methods particularly useful for brain injury survivors in the search to make meaning in lives disrupted? If so, could they also be useful for persons with other cognitive disorders, such as epilepsy, dementia, autism, or posttraumatic stress disorder? Finally, are participatory visual methods only useful in a group setting, or could we also observe meaning-making benefits for patients who use visual methods in a clinical setting with providers?

Peggi Responds

Peggi and I spoke in her kitchen as we sat at a small, round table tucked into a corner and drank green tea.As we talked, Peggi looked through the chapter page by page to remind herself of what she wanted to say. Her five-year-old gray parrot, Pika, joined us partway through our conversation. Pika watched, ate, and welcomed attention from Peggi when she needed a break from reading and talking. Peggi’s response presented here is excerpts from our conversation about her chapter. For ease of reading, I have edited out repetitions, hesitations, or places where she stumbled on her words.

I found it interesting to be a subject, but in a good, I mean in a scientific way. It was a little odd, like the insect under the magnifying glass. But okay, I certainly as a scientist have approached many patients in such a way, you know. Not without compassion, just needing data. Still, it’s odd.

You [as a researcher] are very diplomatic, and I think it’s what allows people to open up further to you. You’re so nonjudgmental, or at least not expressing it.

Excerpted from Brain Injury Survivors: Narratives of Rehabilitation and Healing, by Laura S. Lorenz. Copyright (c) 2010 by Lynne Rienner Publishers, Inc. Used with permission of the publisher. To order the book, visit the publisher's website, www.rienner.com.

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