“You’re Someone Different Now”: An Autoethnography on Identity and Occupational Identity Disruption After Traumatic Brain Injury

Process

This study began in January 2020, when Andi reached out to Devin and Amanda after his brain injury to express the difficulty he was experiencing in making sense of his emotions, in particular grief and feelings of isolation. As stated, the three of us were part of a research team as graduate students, so we had knowledge of each other’s writing styles and how to incorporate Andi’s voice and strengths throughout the project.

At the time, Andi was still experiencing expressive language deficits and dysgraphia. He found the power imbalances during his recovery to be distressing because he felt unheard and undervalued by various health professionals. Therefore, we deemed that conducting a study in which Andi’s perspective as the participant was weighted equally to Devin’s and Amanda’s was essential (Denshire, 2014). A coconstructed autoethnographic approach was most appropriate because our relational trust provided a safe space for Andi to explore personal and vulnerable experiences with the support of peers (Anderson, 2016; Cann & DeMeulenaere, 2012; Rose & Hughes, 2018).

Autoethnographic studies examine the lived experience of the participant researcher and situate these experiences within a broader scope of the literature (Cann & DeMeulenaere, 2012; Chang, 2008; Denshire, 2014). Instead of a positivist perspective with the researcher as impartial observer, autoethnography privileges the insider perspective of participants by having them fully engage as members of the research team (Chang, 2008; Sabat et al., 2006). We chose to complete an autoethnography because our purpose was to sensitize readers to the experience of occupational identity disruption.

We feel it is important to be forthcoming about how our preexisting relationship affected our process. As Cann and DeMeulenaere (2012) noted in their own coconstructed study, “This work is messy and complicated; it would be disingenuous to write a sanitized version of it from a falsely objective and dispassionate distance” (p. 147). Autoethnography is an intimate process that was enhanced by the closeness of our relationships (Custer, 2014).

Data Collection

To create a comprehensive picture of Andi’s experience, we collected data from multiple sources, including interviews, written text, images, and artifacts in the form of medical records. Interviewees are listed in Table 1, and all provided verbal consent to participate in this research project. Lloyd et al. (2006) mentioned that extemporaneous speech and expressive language deficits that follow TBI can reduce the efficacy of traditional qualitative interview approaches, so Amanda and Devin took a more directive role in the interviews to accommodate these while still providing an opportunity to deepen and coconstruct a narrative (Ellis et al., 2017). Primary questions were used as a general guide, with Devin and Amanda asking clarifying questions and assisting in maintaining the structure of the interviews.

We incorporated Andi’s artwork in the form of visual data (artwork), which is appropriate when a participant has difficulty precisely describing their experiences (Wang & Burris, 1997). Wang (1999) stated that image-based research is beneficial because “images contribute to how we see ourselves, how we define and relate to the world, and what we perceive as significant or different” (p. 186). Because our goal was to understand how Andi experienced his world and the changes that were occurring, image-based data were particularly valuable.

Data Analysis

All three of us contributed to the transcription process by splitting interviews into equal portions and manually transcribing each interview into a Word document for review. Andi used an outside service when auditory processing became a barrier. We discussed textual and nontextual data during team meetings, which occurred approximately 3×/mo over 3 yr. This allowed us to take time to fully explore Andi’s experience. We began a few months after his TBI and concluded as he returned to part-time employment. Data analysis initially occurred through an iterative process in which transcripts were hand-coded to organize findings and enable us to look for patterns (Chang, 2008; Kekeya, 2016). Next, we organized the observed patterns into themes and identified salient text for the purpose of constructing a narrative (Cann & DeMeulenaere, 2012; Rose & Hughes, 2018). When we disagreed, themes were kept in a master document and revisited periodically. We maintained open discussions, allowing for cohesive analysis until saturation was reached.

Formatting Our Findings

In writing this article, we sought to balance two forms of autoethnography, what Chang (2008) termed confessional–emotive writing and analytical–interpretive writing (pp. 145–146). In confessional–emotive writing, authors share personal experiences as an “open invitation to mutual vulnerability” (p. 145), whereas analytical–interpretive writing aligns more closely with traditional qualitative methods. In this article, we balance these elements by first sharing a written account of identity disruption by Andi and then describing an analysis organized by the themes that emerged from the data. We hope that by arranging our findings in this matter, our work will serve to both sensitize readers to the experience of occupational identity disruption and elucidate the transactions between occupational identity disruption and identity disruption for Andi.

Prelude

Identity Disruption

Identity disruption has been documented after neurological events, such as stroke and TBI (Candlish et al., 2022; Hofstra, 2021; Martin-Saez & James, 2021). Nochi (1997) defined identity disruption as, “the void . . . the disturbing ‘unknown’ that people with TBI may find when they try to understand themselves” (p. 538). This feeling of inconsistent personhood has been attributed to emergent physiological difficulties, psychological changes, and cognitive deficits (Landau & Hissett, 2008; Levack et al., 2014; Snell et al., 2017). Andi experienced these factors through vestibular and visual deficits, short-term memory deficits, decreased frustration tolerance, and interrupted occupational participation.

During the process of identity disruption, TBI survivors report feeling dissonance between their pre- and postinjury selves (Levack et al., 2014; Myles, 2004; Sabat et al., 2006). Cotton (2012) explained that “The experience of identity disruption can leave a person in a tenuous state of uncertainty about who they were, who they are, and who they project themselves to be in the future” (p. 272). During conversations, Andi frequently referenced who he “used to be”—someone who was intelligent, patient, able to work, and an equal partner in his marriage. As presented in the “Prelude” section, Andi reported feeling that his past self had died. Carroll and Coetzer (2011) conducted a quantitative study and used correlations to measure perceived changes in identity related to psychological adjustment after a TBI. Their results showed that “greater perceptions of change in identity were associated with higher levels of depression and grief” (p. 299); specifically, they identified the connection between changes in self-concept and grief.

Psychological Changes

Psychological changes frequently experienced after a brain injury include depression, anxiety, low frustration tolerance, and dissociation (Landau & Hissett, 2008). Andi experienced depersonalization—“feeling like you are removed from yourself or as if you are in a dream” (Godwin, 2013)—which is present in up to 60% of people who have sustained a TBI (Grigsby & Kaye, 1993). Andi reported looking at himself in the mirror but feeling more like a puppet than a real person. His body was going through the motions of life, but he did not feel like he was actually living. Andi painted “Not a Person,” depicted in Figure 1, to show his experience: “It was about not feeling like a person. That’s the basic outline of what a person could be, but it’s scratched off.”

OPEN IN VIEWER

Figure 1.

Not a Person.

These feelings of being an altered and incomplete person persisted for months. Andi’s brother Griffin recounted a moment of shared grief:

I remember I was sitting . . . at a coffee shop booth talking to you. I can remember where I was, and we just sat in the devastation, kind of the existential threat. Andi is this beautiful thinker, and who is Andi, and who am I, if my sense of consciousness is gone? There’s just, kind of that raw, alive vulnerability of just having to actually face the loss.

Additional psychological changes people experience after TBI include deficits in emotional regulation (Landau & Hissett, 2008; Myles, 2004). Hofstra (2021) noted that “One consequence of brain injury that can be especially difficult to grapple with is anger: sudden, unpredictable outbursts of intense rage that can arise without any clear provocation” (p. 131). Andi described his anger taking the form of “Murderbird,” a four-beaked creature that showed up without warning. When visiting friends in Texas, a car sped through a parking lot, putting Andi and his friends in danger. He stated,

I shouted expletives at the driver, something I had never done before. When I turned back to my friends, one of them said, “Oh, that’s Murderbird. I see it now.” I was so embarrassed that I lost control like that in front of them.

Before his injury, Andi conceived himself as a calm, measured person, and this rapid shift in emotional regulation made him question who he was.

Post–TBI anger can arise from hopelessness (Hofstra, 2021). Andi experienced intense frustration and grief because of the interruption in his life and loss of physical and cognitive capacities. Because of his aphasia, he struggled to communicate his needs. In his journal, Andi wrote, “I’m so angry I think it might eat me up inside. Eaten from the inside out. Self-immolation.” Andi’s friends and family noticed changes in behavior and emotion regulation that were out of character. Andi’s wife, Shan, stated, “He’s never seemed that frustrated and afraid before for as long as I’ve known them. . . . That was a scary thing for me to see.”

Occupational Identity Disruption

Beyond the drastic changes in personal identity that follow a TBI, survivors face interruptions in occupational participation that affect their identity as doers (Bryson-Campbell et al., 2013; Cotton, 2012). This is occupational identity disruption (Carlson et al., 2014; Kielhofner, 2008). Andi’s ability to engage in the occupation of writing was severely impeded because of challenges related to vision, cognition, and attention. Deficits in written expression are common after TBI (Dinnes et al., 2018; Wheeler et al., 2014). Dinnes and Hux (2022) found that difficulty with content generation, organization, and coherence were the most common problems for participants who had sustained a TBI. Levack et al. (2014) found that loss of writing led to a loss of identity in participants with TBIs. One participant stated, “I can’t write. So now, who am I?” (p. 4). Similarly, Andi struggled to define his identity without writing. Andi and his friend Alana described themselves as “word people.” Alana stated, “For us, it’s like, ‘This is the thing I do; I don't have multiple hobbies. [Writing] is the thing I do that if in a perfect world, this would be the thing, the only thing I do.” Because of this, she said Andi’s brain injury “didn't just take a hobby; it took . . . a large chunk of identity.” Because writing was a formative and meaningful occupation, his loss of writing resulted in an occupational identity disruption.

Transactions

Although occupational identity is one part of the broader concept of identity, the relationship between the two is still being explored (Hansson et al., 2022). Engaging in the occupation of writing had previously been Andi’s primary way of managing strong emotions, and many authors express a shared connection to writing. Alice Walker (1994) stated, “Writing saved me from the sin and inconvenience of violence” (p. 108). Similarly, Isak Dinesen (1957) wrote, “All sorrows can be borne if you put them into a story or tell a story about them” (p. 175). For Andi, the interruption in his ability to use writing as a coping tool compounded his experience of identity disruption.

Writing was not only an occupation Andi used to make sense of the present; he also used it to plan for the future. He stated, “I felt rudderless. Like I couldn’t figure out what direction my life was supposed to be taking.” Using writing in this way is common for writers. According to Richard Cohen (1995), “Writers are people who become themselves by writing” (p. 6). To use Wilcock’s (1999) language, the act of doing writing develops the being of writerly identity and opens writers to future growth and possibility. Vonnegut and McConnell (2021) wrote, “What you can become is the miracle you were born to be through the work that you do” (p. 92).

These quotes and comments demonstrate how engagement in the occupation of writing fulfills a spiritual need for Andi. Andi struggled to explain precisely how impactful not being able to write felt, but using spiritual language helped. During an interview, he stated, “Writing was like breathing, like prayer.” Many writers view the process of writing to be a spiritual one. Pat Schneider (2013) wrote, “Putting pen to paper has become my most essential spiritual practice, my most effective prayer” (p. 15).

Keystone Occupation

We struggled to find language that sufficiently captured how writing was fundamental to Andi’s occupational identity. During a research meeting, Andi recalled signs at Horsetooth Reservoir in Fort Collins, Colorado, that described prairie dogs as a “keystone species.” According to the National Parks Service (2020), “Keystone species are incredibly important to their ecosystems, and if removed, the ecosystem itself may collapse.” They have low functional redundancy, meaning specific benefits to the ecosystem cannot be re-created by any other species. In the same way, writing played a role in the ecosystem of Andi’s identity, such that no other occupation could fill.

We decided to use the term keystone occupation to describe the function of writing for Andi. He reported feeling tremendous relief and exhilaration once we created the term. He stated, “I hadn’t understood why writing was so important to me, why the grief felt so profound.” Having language to describe what he was feeling helped Andi understand his own experience and explain it to others. Andi stated, “Writing wasn’t an occupation; it was the occupation. Nothing else could take its place.” It was not until he was able to resume writing and regain his occupational identity that Andi was able to reconstruct his sense of self.