Page Utilities
Laura Lorenz, Lynne Rienner Publishers (page 1 of 10) Page 1 of 10
"Encompassing Darkness and Light" is excerpted from Laura Lorenz's book, Brain Injury Survivors: Narratives of Rehabilitation and Healing. The book creatively enters the world of brain injury survivors through photos taken and stories told by them. The book traces the journeys of three survivors and evokes their achievements and challenges in coping with their brain injuries and changed lives. It tackles systemic problems that undercut the quality of medical and social support for brain injury patients worldwide. The book describes a new approach to improving care for brain injury survivors that will be useful for those on the road to recovery as well as those who care for them.
* * *
Encompassing Darkness and Light
With her narrative of five photographs and their interview excerpts, Peggi shares both the darkness and light of her experience living with brain injury. In North American culture, darkness implies something bad, negative, or evil. In Hollywood movies the bad cowboys wear black hats. Black is the conventional color for mourning. Light in turn implies something positive. In the Western tradition of painting, angels wear robes of white. These broad Western cultural assumptions underlie Peggi’s narrative of darkness and light.
Maurice Merleau-Ponty (1962), however, cautions us to see colors in context. When placed next to each other, they reflect each other and are changed; colors are mutable. He warns against “treating the constancy of colors as an ideal constancy attributable to judgment” (Merleau-Ponty 1962:355).Applied to living with brain injury, the mutability of colors in context implies that darkness and light are relative concepts that can change over time depending on a survivor’s situation, level of healing, and mood on any given day. Merleau-Ponty (1962:355) posits, “color in living perception is a way into a thing.” I suggest that Peggi’s perceptions of darkness and light in her life as seen in her photos and interview text are a way into understanding her lived experience with brain injury.
“Darkness” and “light” are just one of several pairs of opposing terms that Peggi used to represent the dichotomy of her life with brain injury, which she calls both a “blessing” and a “curse.” Physically, Peggi epitomizes the dissonance endemic to living with a condition that is not readily visible. She is striking: tall, blond, and square-shouldered. She exudes confidence, authority, and capability. It is easy to see the confidence and miss her unsteady gait, or her scowl when she is overwhelmed by several people talking at once. Peggi’s “mild” traumatic brain injury is not apparent visually or clinically (Jagoda et al. 2002). Her problems with memory, organization, and auditory processing more than four years after her injury are consistently surprising. “Even my family forgets!” she says.
Looking “normal” is an advantage when Peggi prefers to keep quiet about her brain injury. “I don’t tell everybody. I don’t want my new self to be . . . all I am is a brain-injured person,” she explains. It has also worked against her — most notably when she sued the company responsible for the sign that fell on her head and ended her career as a respiratory therapist, medical researcher, and trainer. As Peggi describes it, a “professional witness,” a doctor with “degrees that were as long as my arm,” steadfastly insisted during the trial that mild traumatic brain injury “does not exist.” The consistent evidence from three neuropsychological tests, that Peggi has a “terrible time” with organizing and memory, could not convince the jury otherwise. After two weeks of trial, the jury awarded compensation for Peggi’s pain and suffering from the sign falling on her head, but no compensation for her lost decades of professional earnings. The jurors could not reconcile Peggi’s “normal” looks and her long-term cognitive challenges. As Alan Radley (2002:12) explains, “the acceptability of illness, like disability, is very much one of appearance.”
Like almost three-fourths of the 1.5 million people each year whose head injuries are treated in emergency medical settings, Peggi’s injury was labeled mild (Langlois, Rutland-Brown, and Thomas 2004; NCIPC 2005). As with an estimated 15 to 30 percent of people with mild traumatic brain injury, however, Peggi’s long-term cognitive impairments resulting from her injury have been anything but mild (Lewine et al. 2007; Cajigal 2007).
Peggi’s brain injury challenges her life daily. She forgets where she is driving, despite placing a note with the destination on her car’s dashboard. She is distracted by “constant background noise” — the television, someone walking past, people talking — that prevents her from focusing “on what’s in front of me.” Tasks multiply “like rabbits” into “moving furry targets” that make her feel “frustrated” and keep her from completing anything that involves multiple steps and careful planning. She relies on a cane for balance and “can’t stand up without” medication, whose copayment increased from $300 to $1,750 per dose when Peggi changed her health insurance plan.
In our photo interview, Peggi describes numerous dimensions of the duality of her experience living with brain injury. Similar to other brain injury survivors, she separates her life into two parts: before and after injury (Chamberlain 2006; Padilla 2003). She looks well but has invisible disabilities. As has been found with other brain injury survivors, she is no longer her “old self” and is learning about her “new self” (Nochi 1998; Pollack 1994; Chamberlain 2006; Padilla 2003). Similar to persons living with a range of chronic conditions, she describes “bad days,” when she dwells in “darkness,” and “good days,” which are “all about the light” (Charmaz 1991). In this chapter, I will explore the dichotomy that Peggi feels and shared in her photos and our conversation about living with brain injury.
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.
See All TBI Topics