Injury to the Brain, Assault on the Self: Identity Re-Construction in the Aftermath of Stroke and Traumatic Brain Injury

AbstractNeurological conditions are increasingly conceived of as physiological disorders, with changes in function linked to specific alterations in the physical brain. What happens, however, when a change in the brain causes a change in what is commonly understood to be the mind or even the Self? In this study, I investigated how patients suffering from stroke and traumatic brain injury (TBI) understood the distinctions between the mind, the brain, and the Self. How did patients coping with neurological changes conceptualize the continuity and/or discontinuity of the Self in the aftermath of injury? Stroke and TBI patients also confronted the unsettling reality that damage to the brain could have an impact on significant aspects of identity: our physical ability to move and care for ourselves and others; our mental faculties and capacity to remember our lives and loved ones; our ability to make decisions and engage in “appropriate” social interactions; our mood, emotional self-regulation, and more. Changes in each of these areas had complex, interconnected effects on key aspects of patients’ identities. If you could no longer control your temper, what happened to your relationships? If you could no longer drive or walk or transfer to the toilet, what happened to your sense of independence, privacy, and self-determination? What if your job required a high level of verbal skill and you suffered a stroke with aphasia that reduced your ability to communicate? What if you experienced unrelenting fatigue and brain fog that caused you to doubt your ability to engage in the activities that were most meaningful to you? Stroke and TBI patients grappled with these sorts of questions and tried to find ways to preserve their sense of Self, insulate their most salient identity characteristics from damage, and/or adapt and find meaning in a new version of the Self. In order to pursue these research questions, I conducted observations at an inpatient post-acute neurorehabilitation facility and 2 affiliated outpatient “day rehab” clinics. I also conducted open-ended interviews with TBI and stroke patients, patients’ significant others, and staff members. Across all sites, I interviewed 50 patients, 26 family members, and 63 staff members, for a total of 139 interview subjects. Interviewing an equal sample of outpatients and inpatients allowed me to examine issues that often took center stage only at the outpatient level. And by focusing on congruent populations on the inpatient and outpatient sides, I gained a useful proxy for longitudinal data and was able to examine how patients’ priorities, plans, and self-perceptions changed, as they proceeded through the stages of rehabilitation and were further out from their initial injury