Living with Traumatic Brain Injury:

A Narrative Analysis of a Survivor’s Photographs and Interview

A Poster Presented to the American Public Health Association Annual Conference,

Boston, MA, November 6, 2006

Laura S. Lorenz, MA, MEd

Doctoral Candidate, The Heller School for Social Policy and Management

Brandeis University, Waltham, MA

Email: llorenz@brandeis.edu

Abstract

Traumatic brain injury (TBI) is a silent epidemic that affects at least 1.4 million people in the

U.S. each year. An estimated 5.3 million Americans are living with disabilities resulting from

TBI, and another 80,000 to 90,000 people join their numbers annually. Research that provides a

deeper understanding of the patient’s perspective can provide clinicians and others with valuable

insights into the lives of TBI survivors and the facilitators and barriers to recovery from their

point of view. This past fall I carried out a pre-pilot study “Facilitators and Barriers to Recovery

from Traumatic Brain Injury: Through the Lens of Photovoice” with approval from the Brandeis

Human Subjects Research Committee and recruited one respondent. I asked her to take

photographs of living with TBI and facilitators and barriers to recovery from her perspective

using a disposable camera with 27 exposures. She finished her camera after three weeks, and we

met a week later to discuss her pictures. Some photographs were symbolic, others were

representational. She told me what each photograph meant for her, why she had taken it, and

how she had settled on or created the image. This poster presents a narrative analysis of 15 of her

photographs and their interview excerpts following an approach suggested by Elliot Mishler

(2004). Grouped into three categories (problem, action, and resolution), her photographs and

interview data tell of her joy in completing simple tasks, her gradual improvement over time, and

her sense of inner pride and hope for the future.

Background

Traumatic brain injury (TBI) is a serious problem affecting not only injured individuals but also

their families and communities. A TBI is an injury to the brain caused by an external physical

force, and may not be evident visually or clinically.1 Common sequelae include headaches and

memory loss; problems with initiation, attention, focus, and follow-through; and depression,

irritability, impulsiveness, and altered personalities. An estimated 5.3 million Americans are

currently living with disabilities resulting from TBI, and 80,000 to 90,000 individuals join their

numbers every year.2 Research that provides a deeper understanding of the patient’s perspective

can provide clinicians and others with valuable insights into the lives of TBI survivors and the

facilitators and barriers to recovery from their point of view.

This Study

I carried out this pre-pilot study in October 2006 with approval from the Brandeis Human

1 Jagoda, A. S., Cantrill, S. V., Wears, R. L., Valadka, A., Gallagher, E. J., Gottesfeld, S. H., et al. (2002). Clinical

policy: Neuroimaging and decisionmaking in adult mild traumatic brain injury in the acute setting. Annals of

Emergency Medicine, 40(2), 231-249. 2 Langlois, J. A., Rutland-Brown, W., & Thomas, K. E. (2005). The incidence of traumatic brain injury among

children in the United States - Differences by race. Journal of Head Trauma Rehabilitation, 20(3), 229-238;

Langlois et al., 2004.

L. S. Lorenz, 2006, Page 2

Subjects Research Committee and recruited one respondent. As specified in the protocol, she had

a cognitive level of at least seven on the Ranchos Los Amigos Cognitive Level Scale (one being

lowest and ten being highest), and she received her injury no more than five years ago. She took

photographs of living with her injury and facilitators and barriers to recovery from her

perspective using a disposable camera with 27 exposures. She finished her camera after three

weeks, and we met a week later to discuss her pictures. She told me what each photograph meant

for her, why she had taken it, and how she had settled on or created the image.

My two research questions were: What is the lived experience of people who have a traumatic

brain injury? What are the facilitators and barriers to recovery from the perspective of someone

who has a TBI?

The Analysis

This narrative analysis of 15 respondent photographs and interview excerpts follows an approach

inspired by Elliot Mishler (2004) to see “the basic story parts, in temporal order: an initial

problem, action to deal with it, and a resolution.”3 Grouped into the plot categories problem,

action, and resolution, the photographs and text excerpts show us “the prologue to a more

extended story” as the respondent moves on with her life, four years after her injury.4

For the analysis, I removed all duplicate photographs and photos that were “mistakes” (e.g., a

photograph of the ground). I did not include some photographs of family members, due to their

repetitive nature. We discussed her photographs in the sequence in which she took them. The

analysis transformed that sequence. Within each category, only the last photograph is placed

purposefully, as it appears to lead to the next category of photos.

Problem People with TBI may feel disconnected from themselves, their environment, and other people.

They may not be able to stay organized, make phone calls, and set and reach goals. They may

find it hard to sift out problems that were already a challenge from problems caused by their

injury. Being sick can be more of an obstacle to having the energy needed to “get out there.”

Memory loss can cause great risks—for example, leaving a cake in the oven till it burns to a

crisp. The last photograph and excerpt hint at an action or strategy that has helped: humor. We

need both the image and the excerpt to understand what the respondent means.

Table 1: Four Problem Photos with Text Excerpts

3 Mishler, E. (2004). Historians of the self: Restorying lives, revising identities. Research in Human Development, 1,

101-121, p. 108. 4 Ibid.

L. S. Lorenz, 2006, Page 3

…that’s how I felt…right after my accident, that there

was no connection and there were so many missing

links as I tried to begin living again…it was kind of

like living in the middle of nowhere…When I saw

that, well, that seemed like a perfect way to sum it all

up, you know

Paperwork…is a great obstacle for me…It’s also a

symbol for the disorganization I encounter in my

mind….there’s a sifting process here for me, because

paperwork was never a forte for me,...how much of it

is just my own pre-existing trait, and how much of it is

the disability? Maybe here it’s like 50-50.

…you said not to forget, that also obstacles, need to be

highlighted, because they are part of life with

TBI…and having this cold, actually it was the flu, was

more of an obstacle … than previous to my disability,

because when you don’t drive, and you rely

on…others, and you’re not feeling good, you just

don’t have the energy to get out there

…this is a burnt cake, and it symbolizes my

forgetfulness…now there is a joke in my house, where

if I ever were to open up a restaurant, it would be

called the well done café, because I tend to like to

make everything well done…but this is pushing it…so

that is my well done cake … and to have a sense of

humor about this whole thing is critical

L. S. Lorenz, 2006, Page 4

Action Here, the respondent shares some actions, strategies, and people she has found helpful. Having a

way to get away from the hustle and bustle of a houseful of teenagers served a good function.

Physical exercise has contributed to physical and mental health. A conscious decision not to

drive has meant her lack of focus will not endanger others on the road. Placing an object right in

the middle of the kitchen floor means it will be remembered.

Table 2: Four Action Photos with Text Excerpts

…in the early to mid stages of my recovery…it was

nice for Paul and I just to be able to get away,

and…we would have our own house away from home.

And with my brain injury, and already experiencing a

lot of confusion…with three college age kids…and

friends coming in and out, and, just, busy life… it

served a good function in that way.

My forgetfulness is such that…if I really wanted to

remember something, I would have to…place it right

in the middle of the floor, and otherwise, it would most

likely be forgotten. Lists, you know, lists just wouldn’t

work….I was trying to remember to take a picture that

day.

L. S. Lorenz, 2006, Page 5

This is…a neighbor who has become a good friend of

mine…in our walks every morning …we’ve been able

to confide in each other a lot…and she’s a great

listener…and…walking in the morning, has helped

me tremendously with my day…I feel very alert by

the end of the walk, and it’s just a great help, to have,

have someone to walk with like that.

I wanted to show that…by the decision not to drive, I

have .. slowed my life down, drastically … driving is a

responsibility, and it is taxing … if you were to take

your focus for.. a, second, away…you are not only

endangering, your own life, but the lives of other

people…so it is a very stressful activity, but we

all…take it for granted.

Action...Continued

People have played an important part in her recovery. A loved one’s patience and understanding

are vital for reducing stress and improving functioning. Emotional support from others helps her

feel safe and comfortable with her current abilities. Children and other family members remain

important to her—perhaps even more so. Therapy helped her initiate action to take better care of

herself—hinting at the third category, resolution.

Table 3: Four Action (continued) Photos with Text Excerpts

L. S. Lorenz, 2006, Page 6

…when I took his picture I said to myself, hmmm,

what would I really want Paul to be doing…he loves

to work with plants, and so, I …said…just do

something with this plant… because I wanted it to be a

metaphor of how he took care of me…He has a lot of

what it takes, mostly patience…very understanding.

…these two people are dear, dear friends of mine, and

also wonderful teachers, mentors for me…what they

represent for me…is how emotionally supportive they

have been, for me…I am able to show them…my

frailty…I’m able to ... feel very safe and comfortable

around them.

And here we have my daughter…she lives with

us…and she has been very supportive..and

understanding, right from the start, of the disability.

..She sees a lot of my compensatory strategies…and

she works with children with, special needs. We have

this now, and we help each other. So that’s a

wonderful thing…. I love having her. So, so, that’s

why she’s here!

I have a lifelong characteristic, of…caring for others.

And when it comes to myself I don’t do quite as

much….I think what matters is…to the degree that we

neglect ourselves. And I think there was a time in my

life when I did it, to the point of neglecting myself.

…I’ve always taken other people, seriously,…at work,

at home, everywhere. But now it may be time to truly

take my situation seriously.

L. S. Lorenz, 2006, Page 7

Resolution The survivor has a sense of accomplishment when she can get things done such as simple

household tasks. Her brain is working better, if not perfectly, three years after her injury. She

feels pride in her accomplishments and has hope for the future—perhaps the subject for another

study.

Table 4: Three Resolution Photos with Text Excerpts

…dishes that need to be done…the sense of getting this

cleaned up every day is, a wonderful feeling…it’s

concrete, it’s easy, it’s uncomplicated, and it’s just a

matter of getting it done…so this is a joy…I never look at

this, any longer as a chore…I really enjoy being able to

clean it all up, it probably just gives me such a sense of

accomplishment, and a job done.

…now this one here is again, another connection,

but it…has nice, big .. bulky connections, … (and)

it’s a whole picture… everything’s working,

connected, and it’s behind the scenes…and those

connections being made behind the scenes is what

makes everything go. So that’s why I took that. It’s

just, kind of simple, but yet it personifies a pretty

big thing. A pretty big thing.

I wanted to take her [Janét’s] picture …where she

would be happy and proud. The pride that you can

see…as she stands there, is the pride that I feel in

my accomplishments. And it’s very similar to the

pride of a young child as she’s growing…she

symbolizes for me the hope, for the future.

L. S. Lorenz, 2006, Page 8

Discussion Grouping the study photographs and their text excerpts into plot categories brings out movement

in the participant’s healing over time and reveals her hopes for the future—information that

would be more difficult to glean from analyzing a single photograph and its interview data,

frozen in time.

For this study, the respondent used several strategies for taking photographs. Some images she

took when she saw something in her house that reflected her experience with TBI; others she set

up on purpose to create the image. For some, she gave the camera to someone else; several

images she created with someone else’s participation. Often with this methodology, respondents

work with others to create their photographs:

• asking photographic subjects to pose in a way that reflects an aspect of their relationship

• giving them the camera to take the respondent’s picture

• seeking their participation in determining how to express an emotion, attitude, or

experience

A major question when considering narrative analysis is: What is narrative? For this study,

narrative is the series of photographs and interview text generated by the respondent. Narrative

analysis is often a case-centered approach, which is certainly true for this study. Rich et al (2002)

and others have referred to a series of respondent images (video) and text as a visual illness

narrative.5,6

For this TBI respondent, four years after her injury, her series of images

(photographs) and text could be called a visual healing narrative.

The Author

Laura S. Lorenz, MA, MEd, is a doctoral candidate in social policy at The Heller School for

Social Policy and Management, Brandeis University. Laura worked for 20 years in international

development as a photojournalist, writer, and editor, and has lived and worked in Africa, Latin

America, and India. She has led community action projects with youth in the U.S. and South

Africa and developed training curricula for after-school programs in the U.S. and Canada. To

gain an understanding of lived experience with traumatic brain injury, Laura is carrying out

photovoice studies through a rehabilitation hospital in Boston, MA and with a TBI survivor

support group in Framingham, MA. Laura facilitates photovoice training workshops and has

provided consulting services to photovoice projects in mental health, immigrant youth

leadership, and community health.

5 Rich, M., Patashnick, J., and Chalfen, R. (2002). Visual illness narratives of asthma: Explanatory models and

health-related behaviors. American Journal of Health Behavior, 26, 6, p 442-453. 6 Rich, M., Lamola, S., and Woods, E. R. (2006). Effects of creating visual illness narratives on quality of life with

asthma: A pilot intervention study. Journal of Adolescent Health, 38, 6, p 748-752.