Brain Injury Survivors: Narratives of Rehabilitation and Healing

Laura Lorenz, Lynne Rienner Publishers
Emcompassing Darkness and Light

"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.

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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.

Getting to Know Peggi

Peggi and I met in September 2006 when she attended the recruitment meeting for a participatory research project using photovoice that I cofacilitated with a brain injury survivor support group in Framingham, Massachusetts. That project, originally planned for 10 weeks, has to date continued for more than two years. Thus, Peggi and I have more than a brief and temporary acquaintance. We have an ongoing relationship, rooted in the deep sharing that occurred as group members talked about photographs, and nourished over time as we created an exhibit and worked together on outreach and education activities.

Peggi arrives promptly at group project meetings. She uses a cane to maneuver around the bulky chairs, turned this way and that around the table that fills the room where we meet. On “bad days,” when headache, noise, or fatigue is “too much,” she wears a baseball cap with the visor pulled low over her face. On “good days,” she wears bright, flowing clothing and a smile. During the group meetings, Peggi talks regularly about her photos, her photographic process, and her life. She is vocal in asking other participants about their photos. She is enthusiastic in suggesting outreach and education ideas and volunteering to take on tasks to turn an idea into a reality. She is gracious about sharing responsibilities for executing tasks when she tires and cannot fulfill her prior commitments. As with other participants, her cell phone interrupts our group meetings, particularly around 3:00, when her son calls to remind her to pick him up from school.

Peggi as Photographer

Peggi’s main purpose in taking photos was “to show the dark and light” of her present life. The light represents the “good days,” when she can “see a way out of the shadows into the light and blue sunny skies.” The dark is “all about the shadows,” when Peggi feels “cynical . . . and less patient, and less understanding, and more irritable, and overwhelmed.”

She was both spontaneous and purposeful in taking pictures, although the spontaneous part was more difficult. She found that she could not remember to take her camera out of her purse as she was “going around, having [her] day.” What worked better was to set aside time for taking photographs and to write it into her schedule.

With the first camera, Peggi felt rushed. “I didn’t have time to think about my pictures,” she said. “I wanted to take a foggy day.” She was one of four participants who used three cameras. By the third camera, Peggi felt more confident about getting the pictures she wanted.

She took a total of 55 photos — 21 images with her first camera, 13 with her second, and 21 with her third. She took 20 photographs of people, including herself, her boyfriend, two sons, lawyers, and therapists. With the first two cameras, she took most of her photographs indoors — in her home, in the home where she babysits, and in various professional offices.With her third camera, Peggi took most of her photos outdoors — 20 of 21 images were taken during a day trip to New Hampshire and ina cemetery. Table 5.1 provides a table of Peggi’s photo topics.

Many of Peggi’s images are metaphors for her feelings. For example, a gravestone represents the death of her “old self,” a path in the woods designates the “journey” of her life since brain injury, and a skylight in a darkened ceiling indicates the “hope” that keeps her going on “dark days.” Peggi found images and metaphors useful for communicating her feelings and experiences during the group project and in our photo interview. Hermine Feinstein (1982:47) might suggest that Peggi’s use of visual metaphors shows her “attempt to comprehend, construct, and convey meaning” in her life with brain injury.

Peggi also took photos that depict more tangible aspects of her life with brain injury: a messy desk shows her disorganization now; elevator buttons reveal her inability to remember which button to push when she attends brain injury support group meetings; and a list taped to her kitchen cabinet shows her strategy for remembering its contents. In our photo interview, however, Peggi spoke almost exclusively about her photos that are visual metaphors.

The Photo Interview

In November 2006, as the first phase of our group project drew to a close, I asked if anyone would like to talk with me one-on-one about their photographs for my research study. Peggi declared that she had already said all she wanted to say about her photos, but she was willing to meet with me if I wanted. When I called to set a time for the interview, she again warned me that she might not have anything more to say. We had to reschedule our first appointment because she had a migraine. We spoke a few weeks later, at my house. Our conversation occurred about four months after she had finished taking her photographs for our group project and this study.


Table 5.1 A Listing of Peggi’s Photograph Topics, by Camera
____________________________________________________
Photograph Topic [Number of Photographs]
____________________________________________________
Camera 1
Kitchen cabinets with labels [1]
Boyfriend/partner [3]
Mural at school [1]
Child she babysits [3]
Floor [2]
Skylight [1]
Drugstore [2]
Sons [3]
Lawyers [2]
Checklist posted at front door [1]
Support group [1]
Mistake (fuzzy) [1]
Subtotal 21

Camera 2
Photovoice project facilitators [3]
Hooks on wall in meeting room [1]
Therapists [2]
Self [2]
Floor near desk [1]
Chess set [2]
Kitchen [1]
Mistake (fuzzy) [1]
Subtotal 13

Camera 3
Elevator buttons [1]
Bare-branched tree against gray sky [1]
View from top of mountain [1]
Ladder on path in woods [1]
Path in woods [1]
View of mountain from path [1]
Mistake [1]
Wooden struts of bridge [4]
View of river from bridge [1]
Cemetery gravestones [4]
Friends [2]
View from window near desk [2]
Computer screen [1]
Subtotal 21
Total 55

We spoke in my basement office, sitting next to each other on a couch, her binder of photos in front of us on a table. Her binder was neatly organized. The photos were filed on white paper protected by clear plastic sleeves, the handouts in order, the binder’s sections marked by tabbed separator pages, as modeled in our group meetings. The organized state of her binder contrasted sharply with some participants’ binders, which had papers and pages crammed in a mishmash of weeks and months of working together.

As we started talking, Peggi sat straight and tall. She punctuated her words with body language. When she talked about the darkness looming, she stretched out her arms and curled her fingers as if to frighten or attack. To communicate her feelings, she used sounds: a long, drawn-out “ugh” communicated a feeling of helplessness. Her neck and back tired as we talked, and she leaned back against the couch and supported herself
with cushions.

We spoke for about an hour and a half. Peggi chose which photos to talk about as we worked our way through her photos, camera by camera. Often her images served as taking-off points for wide-ranging discussions of her life with brain injury — for example, her reactions to her “new self.” She spoke about one photo for almost 10 minutes. She refused to be distracted by the furnace as it periodically roared into life, or the telephone ringing. She surprised herself as well as me by how much she had to say.

Researcher Reflexivity

Peggi has memories of being in charge. She is comfortable making her needs known. At times I felt challenged when Peggi suggested alternate ways of doing things — for example, using her own camera instead of a disposable one provided by the project. The thinking required to consider and respond to her questions and suggestions was good learning for the group. Using project cameras instead of our own meant that all participants were on the same footing. No camera was better than any other. It lessened the pressure to take “good” photographs and emphasized photo content over quality. Discussing the many issues that Peggi raised throughout the project and developing group decisions about them were good practice for me in patience and group dynamics when I might rather have said, “Well, that’s just the way it is!”

Peggi has a fierce intelligence as well as strong experience in instructional design and marketing. Her skills were invaluable when we began the outreach portion of the group project, for example, designing our exhibit and take-away materials. Peggi accomplished many significant tasks, such as securing funding for printing costs. Yet, due to limitations inherent to brain injury, Peggi could not always follow through on the ambitious ideas she had birthed as they grew into complex, multistep tasks. I wrestle with the challenge of follow-through in my own life when my enthusiasms outrace my ability or energy to accomplish them, and I exhaust myself and the people around me. I have learned to recognize and be patient about this tendency in myself, which helped me to feel patient with and supportive of Peggi, even as my cofacilitators and I grew exhausted.

It was both energizing and draining to help furnish a supportive environment in which Peggi and other brain injury survivors could practice old skills and establish new ones. In my experience, this dichotomy, a bouncing between excitement and exhaustion, is endemic to participatory action research projects. It was especially true of this project, in which collaborators who look (and are) skilled also have invisible challenges. My multifaceted relationship with Peggi inevitably influenced our interview as well as my selection and analysis of her visual and interview data.

Peggi’s Narrative of Darkness and Light

Overview

Peggi’s narrative of darkness and light has five photographs and their accompanying interview excerpts. In each of the selected images and excerpts, Peggi shares the dichotomy of her life now, with brain injury, where her “old self” “bumps up” against her “new self.” The theme of darkness and light recurs throughout the excerpts.

Her narrative, presented in the order in which we discussed its photographs, begins with Excerpt 1, a light-filled skylight, which in part represents hope on Peggi’s “dark days.” The narrative continues with a photograph of a floor, where tiles and wood are symbolic of the dark and light of her life. The third photograph is a mural where “promise and hope and creativity” are “fading into darkness.” In Excerpt 4, a game of chess represents Peggi’s divided world. In the final excerpt, a photo of a leafless tree against a gray sky prompts Peggi to explore the challenge of “learning the new me” now that she cannot be her “old self.” Peggi’s photographs are used in this book with her permission.

Each photo and interview excerpt has a title that describes the image and places it in context using Peggi’s own words. The title is followed by the image and its interview excerpt, parsed into lines and grouped into parts (preludes, parts, and codas) (Gee 1991). Each part also has a title, using Peggi’s own words. Anything I said during the interview is italicized; all other text is Peggi’s. A period indicates a full stop. A comma indicates a brief pause, and a series of two dots indicates a longer pause. For some excerpts, I deleted selections from our conversations due to chapter length considerations. As modeled by Mishler (1999), I have noted in brackets the gist of the deleted sections.

A discussion follows each excerpt. For some excerpts, the discussion presents exchanges among participants during photovoice project meetings, when participants talked about their photos and lives. For participant exchanges embedded in the text, I have identified the speakers by their first name and last initial. For participant exchanges pulled from the text and parsed into lines, I have identified the speakers using their initials. “P.R.” is Peggi.

Narrative of Darkness and Light: Five Photos and Their Interview Excerpts

Excerpt 1: Skylight, “There’s light in the dark”

Part 1: I’m in a cave sometimes it seems
That’s just, you know ..
I like that one
The sense sometimes,
I’m in a cave sometimes it seems, hmmm
Looking out.
Without being able to really see anything when you look out

Part 2: You can’t get out, and you can’t get in
You can’t get out.
And you can’t get in.
You can’t get up there. hmmm
It’s sort of, like, “huh!”

Part 3: But . . . there’s light in the dark
But, it’s hopeful, you know? uh huh
There’s light in the dark.
Yes. Well, that’s interesting.
But kind of almost unattainable, hm hmm you know?

[photo of a skylight in a dark ceiling]

Discussion: Skylight, “There’s light in the dark”

Peggi’s image of a skylight is both striking and abstract. I see a parallelogram whose sharp lines and distinct geometric shape stand starkly against a field of black. Without the title and interview text, I would be challenged to discern what the image portrays.

Peggi’s interview excerpt is brief. The lines are short, especially in Part 2, when she uses the word “can’t” three times in a repetitive refrain. The rhythm and repetition of Part 2 remind me of a nursery rhyme or a chant that children might use to taunt a vulnerable “other.” Her use of language seems self-deprecating: “that’s just,” for example, as if denigrating her image and its power to communicate isolation and longing.

Explaining her photo, Peggi conveys a sense of being stuck — aware that she is surrounded by the darkness of her cave, yet unable to get up to the light of the outside world. Peggi concludes her conversation about the photo by explaining that the image is “hopeful” because “there’s light in the dark.” She intimates that the hopefulness is almost out of reach, like the skylight. Peggi is using her image to make known her feelings.

When Peggi spoke of the photo with the group, she explained that it represents a “good day,” when she sees “light and . . . an escape . . . a way out of this darkness,” which she also calls “the shadows.” Kathy Charmaz (1991:50), in describing lived experience with chronic illness for persons with a range of conditions, describes a “good day” as a day when illness “remains in the background of their lives.” A good day can also mean “being the self one recognizes” and a day when “nagging fears about the future all recede” (Charmaz 1991:50). A “bad day,” on the other hand, is marked by “isolation” when “illness . . . takes center stage” (1991:51), and the self bears “little resemblance” to the person one wishes to be (1991:52). Peggi, like Charmaz’s informants, appears to identify a good day as one in which illness recedes to the background. Distinct from Charmaz’s informants, however, Peggi appears to relate good days and bad days to color: darkness for bad days, and light for good days.

Peggi’s discussion of light and shadows in her skylight image prompted the following exchange between Peggi and David S., a man who received his brain injury eight years prior when his car crashed into a moose.

P.R. The bad days it’s all about the shadows

D.S. Friends who left
People who I thought were going to be there
After the accident
Were nowhere to be found.
It was the people who I didn’t expect to be around
Were, like, right there.
And it really hurt.

P.R. Yah!

D.S. People I hadn’t seen in years were calling.
They were really supportive.
People who I thought were friends
Really weren’t friends.

P.R. Really were not friends
And how that changed my whole outlook on the world

D.S. Made me very cynical

P.R. Wanting to isolate myself

D.S. Shut down

P.R. Shut down,
Stay away,
Stayed in bed.
I hibernated for a year or two.
Just didn’t go out.

Peggi and David S. are speaking about what it was like for them soon after their injuries. Both of them “stayed in bed” for two years as they recovered. They isolated themselves, “shut down,” “hibernated,” and grieved for lost friends and lost selves. The sense of isolation that Peggi and David S. describe implies loneliness, which Rosedale (2007:204) describes as “an opportunity to transcend unimaginably painful conditions and search for meanings.” A period of isolation can also be an opportunity for healing — perhaps even necessary to healing for them. Brain injury can cause extreme sensitivity to light and noise (Stoler and Hill 1998). Isolation may ease the pain and confusion of too much stimuli during the early healing period. Peggi and David S. each hibernated for “a year or two.” For some brain injury survivors, isolation and loneliness can become habits, reinforced by an ever-narrowing circle of friends, activities, and relationships (Charmaz 1983; Charmaz 2002; Pollack 2005).

Excerpt 2: A Friend’s Floor,
“I was trying to get the darkness and the light”

Prelude: That’s just a friend’s floor
That’s just a friend’s floor
And I was trying to get the darkness and light ..
Yup. Similar to the other photo.

Part 1: The world of my belief that
meets with the reality
There’s, almost two worlds
That butt up against each other
The world of my .. belief of how I am now,
That meets with the reality of,
That I’m not that way, you know?

Part 2: I convince them and myself
that I’m my “old self”
One of the things I’m good at is
I can sit and talk to people
And say, “Yeah, absolutely. I could do that.
I can totally see I could do that.” Yes.

Part 3: Then the reality keeps comin’ up
And I convince them and myself that I’m my “old self.”
And they .. if they know my “old self,”
They’re, “Well, great. Good. Take it and run.” Okay.
And then the reality keeps comin’ up

[photo of a floor with wood floorboards on one half and dark tiles on the other]

Discussion: A Friend’s Floor,
“I was trying to get the darkness and the light”

In Peggi’s image of a friend’s floor, I see dark, pitted tiles flush against a wooden floor whose boards emphasize its linear nature. The tiles denote structure, but the organic, mottled color of the stone dominates. Seen out of context, the two halves of the picture appear to oppose each other.

Peggi’s interview excerpt has coherence. It both begins and ends with “reality” — a reality that she appears to believe exists only outside herself. Peggi explains that her inner world is her “belief of how I am now,” and the outside world is “the reality that I’m not that way.” Even Peggi forgets that she is no longer as capable as she once was, when she received an award for “Respiratory Therapist of the Year” in Massachusetts. After brain injury, short-term memories can be slippery, while memories of past competence endure. As Peggi says,

I have the memory of being competent.
And I’m still competent in some ways
But I’ve lost some of my areas of competence.
And nobody gave me a list of what I lost.

Peggi takes on tasks that, based on past competence, she thinks should be easy (Nochi 1998). Because of her brain injury, however, they are not. In a study of brain injury survivors’ loss of self, Masahiro Nochi (1998:872) identified “loss of self by comparison” as one of the three major themes that emerged from informant interviews. Survivors commonly compared their current self-image with one from the past: I used to be “such and such” but I am “not like that any more” (Nochi 1998:872).Mary Feldhaus-Weber (2003:51), who was severely brain injured in a car accident, describes feeling that “I was a stranger to myself. I was lost.”

Any injury (not just brain injury) “which results in sudden disability poses a particularly potent challenge to self-identity” (Mattingly 1998:118). If the body — or mind — is suddenly changed, “does the self come to an end in some way?” (118). Perhaps in telling stories of her life in the context of this research and the support group, and in day-to-day living, Peggi is showing us how her new self gets “constructed and communicated” (119).

When Peggi discussed her floor photo with the group, other participants echoed her experience of the death of a former self. One said, “It feels like we’re treading water, or slipping around,” instead of “accomplishing things.” Another explained that he can spend as much as four hours “paying a bill and checking an e-mail.” For brain injury survivors, disabilities due to brain injury can be a constant reminder “of the contrast between the past and the present” (Padilla 2003:421).

Making comparisons between the “old self” and the “current self” brings up feelings of blame, anger, and sadness. When Peggi fails to negotiate “simple” tasks, such as inputting e-mail addresses for the parent-teacher organization at her son’s school, she feels like a failure. Brain injury survivors may feel their failures keenly and judge themselves when they fail at simple tasks “again and again” (Feldhaus-Weber 2003:52). For Peggi, comparing her new self and old self and noting the impairments in her brain-injured self are the “emotional part” of living with brain injury. As she explained during a group project meeting, “To always compare our old self with our current self is painful.”

When Peggi spoke about her floor image during a group project meeting, she brought up an aspect of her experience that did not emerge during our photo interview, several months later:

This photo represents light and dark,
Both my past life of light, structure, a meaningful and directed pathway,
And then the spotted dark and hard surface of my new life,
Where I am trying to make pathways.
And then again, perhaps my new life is becoming less dark, less difficult, more structured,
So it is sort of both.
Going back to the light.

In the context of the group, the structure of the tiles on the floor appear to have inspired Peggi to see her new life with brain injury as becoming “more structured” as she tries to “make pathways” in her brain. In the group context, Peggi shared a self that is growing more competent. She spoke of a new life that is starting to integrate elements from her old self and the new Peggi.

The brain injury support group offers a range of activities — from sharing lives to working with puzzles, visiting local nature reserves, learning how to ride a bicycle, and participating in expressive therapies and photovoice. Group members who joined photovoice seek companionship with peers, opportunities for emotional healing, and ways to help their brains forge “new pathways.” Explaining her floor image in the context of the group prompted Peggi to share a more positive reading of the image than she did when “audiencing” her photo for me several months later (Rose 2007).

Charmaz, in an article on the “self as habit” (2002:35S), suggests that “habits can become a bridge between self as process and self-concept as a stable object.” Perhaps habits of successful coping practiced in the context of the support group are forming a bridge that lets Peggi move more easily from dark to light, from old self to new self, from despair to hope. We do not see a bridge in her photo, where wood and tile bump sharply against each other. Yet in speaking to the group Peggi suggests that the distinction between old self and new self is not as sharp as it appears in her image of the floor. Perhaps repetitive memories of successful coping are taking root in her brain and becoming her new “reality.”

Excerpt 3: The Mural,
“You can be grateful . . . or you can curse”

Prelude: This is a mural at my son’s high school
This is a mural at my son’s high school.

Part 1: Promise and hope and creativity . . . fading into darkness
There’s all this .. promise and hope and creativity and ..
Then it’s fading into darkness hmmm
So it’s sort of also .. like ..
Wanting to .. attain .. a goal ..
But also having this darkness of ..
It’s not just about trying to get to the goal,
There’s darkness creeping in.
There’s, you know ..
There’s a dark side.
Well, I try not to focus on that stuff.

Part 2: Sometimes . . . it’s okay
Yeah, the dark, you know,
The .. anger, the .. despair, the .. loss, sense of loss.
That you try to pretend isn’t there sometimes,
And sometimes, it’s there
And you accept that it’s there
And you’ve encompassed it
And it’s okay.

Part 3: Other times . . . it’s coming to get you
But then there are other times
When it’s coming to get you.
So it’s hard to, um ..
Sounds a little scary.
Yeah, a little scary.

Part 4: You can be grateful . . . or you can curse
I mean, just the loss of,
It’s just, you know, I ..
You can be grateful ..
For huge changes in your life that you didn’t expect ..
Or you can curse them ..
But you can do both too, you know?

Part 5: Sometimes I wonder . . . how different things might have been
Some things are good.
Some things I wonder if,
That accident hadn’t happened,
If I could have, would have .. if
How different things might have been. Hmmm

Coda: One of those life things
Yeah, but, but they’re not. Hm mmm
It’s one of those life things, you know?

[photo of a painted mural]

Discussion: The Mural,
“You can be grateful . . . or you can curse”

A mural at her son’s high school presented an opportunity for Peggi to continue to speak of darkness and light. The quality of light in the image — the perception of “fading into darkness” — results from the limitations of the flash on the study cameras. Peggi used the camera’s distortion to communicate her experience not only in our photo interview but also during a group project meeting:

I like it that the photo shows the mural goes on into the darkness
As this demonstrates how I can only handle so much information at once
And then it becomes too much
And is dark to me in my comprehension

Her statement prompted a loud murmur from the brain injury survivors present.

In this second excerpt, Peggi equates light with “promise,” “hope,” and “creativity” and darkness with “anger,” “despair,” and “loss.” She describes a strategy she uses to avoid being enveloped by darkness: she tries “not to focus on that.” Focusing on the brain injury patient’s “remaining assets” and avoiding a focus on “residual deficits” is a recommended therapeutic approach for brain injury survivors (Pollack 2005:654).

In Excerpt 3, Peggi delves deeply into the dichotomy of her experience with brain injury and her perceptions of her healing process. She reveals the promise and hope of healing and shares the feelings that threaten her progress. She acknowledges darkness but resists its presence. She chooses to encompass her “despair” and “loss,” an act that seems both painful and hopeful.

The word “encompass” can mean an encircling, in which anger, sense of loss, and injury are recognized and embraced as part of the experience (Roget’s International Thesaurus, Fifth Edition:969), implying acceptance. “Encircle” also equates with “girdle,” as in wrestling (683), which implies engaging, facing and fighting, struggling and contesting (364). Gay Becker (1997:3) describes the “tension” in a life disrupted as a “fight within the self.”

Four years after her accident, Peggi does not merely “pretend” that her feelings of loss and grief do not exist. She interacts with her feelings. She struggles to see her injury as only one part of herself. With Excerpt 3, Peggi shows us that she is both embracing and resisting “the patient role” and is actively negotiating “the balance of the ‘healthy’ and ‘ill’ aspects” of her life with brain injury (Radley and Chamberlain 2001:324). Peggi is not a “passive” recipient of her brain injury symptoms; rather, she is “actively” interpreting them (Nochi 1998:869).

Dichotomy of experience plays out as Excerpt 3 continues. Peggi describes the creeping “dark” by curling her fingers and placing her hands in front of her face like a monster about to attack. Her words and action evoke bravery as she engages with her sense of loss even when fear threatens to overwhelm. In Part 4, she describes two choices in her life: she “can be grateful .. for huge changes” that she did not expect, or she “can curse them.” She explains that it is possible to “do both” at the same time.

As with other people whose lives are suddenly disrupted by injury, violence, or illness, none of the survivors I worked with had anticipated the sudden life change brought on by brain injury (Becker 1997). A moose ran into the road and totaled a car. A sign fell on someone’s head. A car hit a patch of ice, slid under a truck, and was crushed. No one can prepare for brain injury, increasing the urgency of allowing time to grieve. As seen in Excerpt 3, grieving can be both painful and healing.

Peggi’s interview text has a wistful quality, a feeling of longing for the past, especially in Part 5 where she wonders “how different things might have been.” Many brain injury survivors live with feelings of regret (Pollack 2005). One group project participant, injured in a car accident 30 years ago at age 19, notes that “in the minds of many of us there are thoughts that we will never achieve some of the dreams we once held so dear.” With his brain injury, he feels that he lost his future (Nochi 1998). From Peggi’s perspective, her present and future do not include the professional work she found “meaningful.” Instead of designing lifesaving training for people with a chronic and life-threatening disease, she babysits for a friend’s young child. Yet she is grateful for “good” aspects of her life, as depicted in photos of her boyfriend-partner, her sons, and the members of the brain injury support group, among others.

In the excerpt’s coda, Peggi interrupts her wistfulness with an abrupt reality check. She might wish things were different, “but they’re not.” Peggi acknowledges her wish that things might have been different and chooses to confront reality instead. Peggi shows us that living with brain injury means struggling with something she cannot change. She can wrestle, confront, embrace, and encompass, or she can feel regret, helplessness, and fear. In Excerpt 3 and in her life, Peggi appears to be doing “both.”

Excerpt 4: The Chess Set, “This game that I used to love . . . is just a mystery now”

Part 1: I was trying to show ...
I’m not able to play that game anymore
This is a chess set.
I was just trying to show, like,
Other people are playing
And then, all my pieces are all,
Huddled in the corner.
And .. the broken one is,
Out there ..
Interesting
I’m not able to play that game anymore.

Part 2: I don’t know how to
The other side’s like, “Come on. Play the game.”
And I’m, like, “I don’t know. I don’t know how to” ..
So you set that up Yeah.
To take the picture of it Yeah

Part 3: The world is still playing . . .
and my forces are divided
The pieces huddled in the corner, and trying to ..
And this one’s broken,
You can’t tell that’s broken in half. Hmmm
And, I was trying to show, like ..
One side is still ..
The world is still playing,
And I .. my forces are divided.

Part 4: I don’t know . . . what I’m supposed to be doing
I don’t know what I’m supposed to be doing.
I’m trying to ..
This one’s broken in half.
I don’t know,
What I’m supposed to be .. doing, getting ..

Part 5: I’m getting creamed
You know, this game that I used to love
And play all the time,
Is just a mystery now.
I’m getting creamed.

[photo of a chess set with a broken piece]

Discussion: The Chess Set, “This game that I used to love . . . is just a mystery to me now”

Duality, darkness, and light are readily apparent in the photo of Peggi’s chess set. Two opponents face each other. One is black; one is white. Peggi describes herself as “divided” and “broken in half,” like the pawn in the middle of the board. Peggi staged her photo, purposefully placing the pieces to illustrate what she wanted to communicate about her life with brain injury.

Peggi has used the game of chess as a metaphor for the game of life.Words she uses to describe her experience with chess (and, by implication, life with brain injury) are “huddled,” “not able to play,” “don’t know how,” “broken,” “divided,” and “getting creamed.” Unlike other excerpts in her narrative of darkness and light, Excerpt 4 contains no words or image of hope. A game that Peggi used to “love” is now “just a mystery.”

In Part 1, Peggi equates herself with the “huddled” team in the corner and the “broken” player alone in the middle of the board. She is both out of the game (in the corner) and exposed and vulnerable (alone in the middle). She is divided: she has an old self that was whole but is now sidelined, and a new self that is broken.

In Part 2, Peggi says that the opposing team wants her to play, is urging her to play. Her response is, “I don’t know. I don’t know how to.” Her statement implies failure — to meet expectations, to fulfill a role, perhaps a career role in particular. Pollack (2005:644) notes, “the loss of the status and identity that are associated with having a job” can be significant for brain injury survivors. He describes this loss as “a hole in one’s identity — a further assault on the injured person’s sense of self” (2005:644). The loss of her career is a major hole in Peggi’s life.

In Part 3, Peggi returns to her divided forces, consisting of several pieces huddled in the corner and a broken one exposed in the middle. She notes that “you can’t tell” in the photo that the piece exposed and alone is “broken in half.” Perhaps she is referring to herself and many other survivors, who look fine but are not.

In Part 4, Peggi explains that she does not know “what I’m supposed to be doing.” The path to healing from brain injury is still being defined. Every person’s brain injury is different; every person’s pathway to healing is different. “Not only their behaviors but their entire beings are in flux” (Pollack 2005:643). Empirical studies to measure the outcomes of different rehabilitation interventions are lacking (Gordon et al. 2006a; NIH 1998). Insurance providers often limit postacute rehabilitation services for brain injury (NIH 1998). In the confusing context of brain injury rehabilitation, how could Peggi possibly know what she is “supposed to be doing”?

With Part 5, Peggi concludes her excerpt by telling us that chess (and life with brain injury) are “a mystery” and she is “getting creamed.” As she commented to the group when discussing her chessboard image, “The world’s a pretty competitive place.” Challenges with fatigue and executive functioning impinge on brain injury survivors’ productivity in work settings. In work settings where timeliness and meeting deadlines are priorities, brain injury can be a major disadvantage. From Peggi’s perspective, living with brain injury appears to mean losing — at chess, at life, at career, and at engagement with the world.

Excerpt 5: Dark Branches and a Gray Sky,
“This is just the new thing”

Prelude: Things that made sense along the way
I was trying to find things that made sense along the way
Was this one of yours, too?
I don’t know.
This tree?
I don’t think so. It could be, but maybe not.
Let’s see. Let’s look at the back. [Peggi yawns] Yes. Yes. I think so.
It is? Okay.

Part 1: That’s odd
So no leaves on that tree. That tree has bare branches.
And a very incongruous light sticking out of this.
It’s an odd, that’s odd.
But that’s how things are now.
Everything’s a little odd, like ... there isn’t the same sort of congruity that I used to feel ... in my life.

Part 2: One day I became somebody else
Again, it’s about recognizing and accepting
And .. learning, learning the new me, hmmm
I used to have a really good handle on who I was.
And one day I became somebody else.

[Deleted: discussion of people’s empathetic but uninformed reactions to her symptoms and how she doesn’t tell everybody about her brain injury]

Part 3: I don’t want . . . to be . . .
all I am is a brain-injured person
I don’t want to [clears throat]
I don’t want my new self to be all,
All I am is a brain-injured person.
I’m gonna have to,
Be my new self,
And be whole and complete,
Even if I’m not my old self. Yeah
I’m not gonna get back to that old self.
That old self’s not comin’ back. Hmmm

Part 4: My friends . . . say . . . “You’re fine now”
You know, that’s part of the thing. Hm mmm
It bothered me, sometimes it would bother me, but .. hm hmmm
And my friends who knew, would say,
“I know, but you’re, you’re fine now.”
I’d be, like, “I .. am so happy you see me that way. It’s great.” [chuckle]
But, you know, it’s sort of, like, leaving you out on the porch, in a way.
You know what I mean? hmmm

Part 5: It’s good . . . to be, seen, as whole, right?
But then it’s good .. yeah
To be, seen, as whole, right? Yes
I don’t want to say, “No, no. I’m not whole.” [Laura laughs]
So that’s, you know, so that’s a good thing.
And I guess in some way it’s still part of the grieving. You know?
Hmmm, right.
So acknowledging .. that.

Part 6: It’s a step in the right direction
But .. I mean, even when you noticed it stopped,
I think I, it’s a step in the right direction to just let it roll by, hmm mmm
Instead of having to go, “Yup, that’s different.”
Right. Part of the acceptance, I guess.
Yeah. This is just the new thing.

[photo of dark branches against a grey sky — see first page]

Discussion: Dark Branches and a Gray Sky,
“This is just the new thing”

Peggi’s image of dark branches against a gray sky is one of 21 pictures that she captured on a day trip to New Hampshire. When she arrived at my home for our interview, the photos from her trip were stuck in the pocket of her binder. They were the last photos we discussed. While we laid them on the table in front of us, she explained that she had used the trip to take pictures of “things that made sense along the way.” It was a glorious day of trees bursting with leaves of orange and yellow and red. The image of black, bare branches reaching toward the sky stood in sharp contrast to the other photos from the trip. Peggi did not talk about her image of bare tree branches with the group and did not remember taking the photo. I had to turn the print over and match its exposure number with the other images on the table before we could be sure it was Peggi’s photo. As she did not remember her intention in taking the picture, her discussion of the image was spontaneous. She was audiencing the image with fresh eyes (Rose 2007).

Excerpt 5 illustrates the bouncing back and forth that Peggi is doing and feeling in her self and her life. Using the photo, she first describes her life as “incongruous.” Synonyms for “congruity” are “symmetry,” “accord,” and “agreement” (Roget’s International Thesaurus, Fifth Edition: 920). When something lacks congruence, it may be illogical or inconsistent. Her life used to make sense, and now it does not.

Next, Peggi lays out her current task, “learning the new me,” now that she has become “somebody else.” She reveals that she does not want to be seen as just “a brain-injured person.” She wants her new self to be “whole and complete.” Peggi appears to be expressing that she seeks coherence, in which old self and new self are “indivisible” (Roget’s International Thesaurus, Fifth Edition:911). She appears to imply that a brain-injured person who dwells on the “old self” is not whole.

In Part 4, Peggi wrestles again with her new self, not quite willing to accept it, wishing for more. In Part 5, however, she bounces back toward acceptance, as if arguing with herself. As Peggi gradually sheds her habit of comparing her old self and new self, her sense of loss, particularly loss of self, appears to be diminishing (Nochi 1998).

Peggi does not feel at ease about her life with brain injury. In her narrative of darkness and light, she repeatedly demonstrates tension between her “new self” and “old self,” between former competence and new failures, between feeling “broken” and feeling “whole,” and between “darkness” and “light” in her life. In Part 6 of her last excerpt, however, she provides a glimpse of a “new” Peggi, who acknowledges loss even as she is able to “let it roll by.”

Discussion

As seen in her narrative of dark and light, Peggi appears to be establishing a “sense of coherence” in her life with brain injury (Radley 2002:3). Participating in my study appears to have provided Peggi with an opportunity to make visible and communicate a “restoration of coherence” that she has been working toward for several years (2002:11). Using visual methods appears to help with the process of “confronting the inevitability of disease,” or in this case the inevitability of impairment due to brain injury (2002:14). Perhaps taking pictures for the study, writing captions for them, and speaking about them with me and with the photovoice participants allowed Peggi to express “feelings that were previously inchoate,” or imperfectly formed (2002:11).

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.

The pictures themselves could be given so many different narratives. You might see them differently another time. The “new self” concept is very true. Using the word “healing” instead of “recovery” is very important, because when you get stuck wanting to be your old self, it only leads you to frustration, and takes away from acceptance.

A lot of the other [photovoice] participants had very similar experiences they wished to share. Like David S., you know, “people who left, people who I thought were going to be there, who after the accident were nowhere to be found.” That was shocking, shocking. People you thought were your friends. It’s like you were damaged goods or something. Shocking. So, yeah, “hibernation and grief.” Now, every little thing, though, as you go forward is a huge victory.

“Loneliness and light,” yes. But also, it was hard to go out and my speech was so bad. People thought I was retarded. So people would talk really loudly, “do you need help?!” And some people were actually really mean. Like, mean, mean, mean, laughing and pointing. So that was hard, too. I had a sensibility of an accomplished professional, who now couldn’t read, couldn’t speak, and that was hard.

“Habits of successful coping practiced in the context of the group are forming a bridge.” That’s true. “Memories of successful coping are taking root.” That’s true. “Light and dark” seems to be appropriate. . . . I think this is a good and accurate thing of me and what I think and what’s going on.

It’s still true. A lot of the struggles are similar, but I just have a better expectation. There is that sense of grief and loss, and instead of staying there and feeling hopeless, I go “okay, well, so.” You know, I used to run, in races and stuff, 10Ks. And now, I can’t, but I have a treadmill, and I can hold on to the sides, and I can walk, at a pretty good pace even on my treadmill. So that’s something, you know. Instead of bumming out that I can’t run, I just can go on the treadmill and I can hold on to the sides. I think I spend less time mourning and more time getting something done.

“Old self, new self. Not completely at ease with my life.” Yeah, because I want to be able to contribute, you know. That’s one of the nice things about photovoice.

“Participating in this study appears to have provided Peggi with an opportunity to make visible and communicate a restoration of coherence that she has been striving for and experiencing for some time.” Yes, it was a whole series of steps. But this [photovoice] is one that I probably wasn’t ready to do, earlier. The thing that really got me in motion, and I was really not in motion, I was really stuck, and hopeless and helpless, and stuck, was the expressive therapies class [offered through the support group]. That class did make me go from being really stuck, really lost, like hopeless, to, you know, I can do stuff. Even with photovoice, I thought, “I don’t know, do I want to do this?” But every time I have taken the initiative to go do a thing that was offered, it has brought me hidden benefits I did not anticipate, that I wouldn’t have believed could really come out of doing it.

Peggi wanted to use the opportunity to respond to her chapter to communicate something “of importance” to other survivors and their families. Peggi’s interest in the advocacy and outreach aspects of photovoice grew over time. She has spearheaded extensive outreach work by the photovoice group, including initiating a Veterans and TBI program at the Newton Free Library and photovoice exhibits at a neurology conference and a stroke rehabilitation awareness day at a Boston-area hospital. In support of her ongoing efforts to generate awareness of TBI and its consequences, I include her message to survivors and their families as expressed during our discussion of her chapter:

The single most important thing that I would try to tell other people who have brain injury, or friends and family of those who do, is the confusion and anxiety and depression that initially is accompanied with every step. Because you don’t know, is this going to be it? And most of the doctors say, “that’s it, you don’t really get much better. Within six months, you’re pretty much peaked at how better you’re going to get.” [As time passes], though, that sense of loss and anxiety and depression and just grief, is [there], but it’s only for a fleeting moment. You go, “I think I can do this,” and then you realize, “I really can’t do this.” And instead of becoming immobilized with that grief, you go, “That’s right, I need a nap.” Or “I need to bite off a smaller bite. I’m not that old person. I’m a new person, and I’m going to employ the strategies I’ve used.” And you can still get all the way through it [the task at hand], just not like you thought you could. And that piece, of hope, is the single most important thing. . . . Brain injury doesn’t mean never, it means just not now, maybe. And maybe not ever, but at least I can get a rung on the ladder, I can hold on to something and try to get better.

One of Peggi’s photographs and its accompanying narrative became the theme for the TBI photovoice exhibit. They echo the sentiments that Peggi expressed above and reinforce her message that it takes time and action to heal in the face of uncertainty and loss. Perhaps, as Peggi intends, this new photo and its caption will inspire hope in brain injury survivors, their family members, and their providers.

It’s a muddy, rutty, hands-and-knees crawl up to the first rung of the ladder that begins to make some semblance of sense — and then you get to begin to really struggle. The climb does not and will not end. There is no final healed bone or mended tear of the skin to get over. Sometimes weekly, and sometimes daily there is a new step to attempt to get to your “new self.” You can’t even ever hope to get back to your “old self.” Oh well! Maybe there will be a good view on this journey that I hadn’t expected.

Posted on BrainLine March 2, 2010

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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