Finding Identity, Connection, and Purpose After Brain Injury

By Diane Hernandez, CBIST, CRC

Lifelong recovery after brain injury from a biopsychosocial perspective includes looking beyond function to meaning, self-perception, identity, and confidence. Cicerone et al. (2004) found that self-efficacy, not community integration alone, is strongly correlated with life satisfaction after brain injury. Recovery is not simply about regaining physical abilities. It is also about rebuilding identity, reconnecting with community, and finding purpose after life has changed. This article focuses on individuals whose post-injury journeys led them to a place where they can confidently say, “I can function successfully in my world.” They have embraced life, and life, by all accounts, embraces them back.

Samantha (Sam) was mountain biking in Colorado in September 2016 when she went over her handlebars and suffered a traumatic brain injury. She spent three months at Craig Hospital before returning home to Indianapolis, where more than 100 friends and family members welcomed her at the airport. Although she was surrounded by support, her recovery soon hit a major barrier: insurance only covered 20 outpatient therapy sessions a year. Sam needed far more than that. Determined to not stop progressing, she began rebuilding her strength independently, using a seated elliptical machine at the gym and committing herself fully to recovery.

Sam eventually found NeuroHope, a nonprofit rehabilitation and wellness center in Indianapolis that provides long-term therapy, adaptive exercise, and community-based support for individuals recovering from neurologic injuries. Through NeuroHope, she participated in adaptive recreation retreats and peer activities that promoted confidence, social connection, and independence. She also connected with LoveYourBrain, a nonprofit organization that supports brain injury survivors through yoga, retreats, mindfulness, and peer support programs. Sam described the experience as transformative. “Having a chance to connect with other survivors makes life a little better knowing there are other survivors just like me,” she said. “It gives me hope knowing there are other avenues to brain injury recovery when the physical progress seems to end.” These programs helped her recognize that healing involved emotional recovery and community connection, not just physical rehabilitation.

Through the Rehabilitation Hospital of Indiana Resource Facilitation Program, Sam also accessed vocational rehabilitation services. With support from a brain injury-informed employment consultant at Easterseals Crossroads, she began volunteering at her local YMCA before moving into a paid position at the front desk and wellness center. The role allowed her to reconnect with her pre-injury identity and education in kinesiology. Later, after moving to Missouri, she continued building community through the Brain Injury Association of Missouri and Brain Buddies St. Louis, a social and advocacy group for young adults living with brain injury.

Like Sam, Laura transformed her lived experience into advocacy and education through her involvement with the Brain Injury Association of Kansas and Greater Kansas City. More than 20 years after her injury, Laura continues connecting her work in traffic safety, suicide prevention, and substance misuse prevention to brain injury awareness and prevention efforts. By sharing her experience, she helps others understand the long-term and often invisible effects of brain injury while reducing stigma and increasing awareness.

“Being involved in my community turns my lived experience into impact—it is a reminder to myself and others that healing doesn’t happen on a schedule and that connection can be just as powerful as treatment,” Laura explained.

Stories like Sam’s and Laura’s demonstrate that recovery after brain injury is not solely about medical stabilization or functional improvement. Meaningful recovery often happens through relationships, advocacy, employment, recreation, and belonging. Community integration can transform survival into purpose and remind survivors that they are not alone.

Resources for Connection and Community Participation

Individuals and families looking for opportunities for connection after brain injury should consider reaching out to their local Brain Injury Association of America affiliate. State brain injury associations can often help identify local resources, support groups, adaptive recreation programs, vocational services, peer mentoring opportunities, and community organizations similar to the programs highlighted below.

Brain Injury Support and Social Groups: Individuals interested in programs similar to Brain Buddies St. Louis can begin by contacting their state Brain Injury Association affiliate, local rehabilitation hospitals, Centers for Independent Living, or community brain injury organizations. Online searches using terms such as “brain injury support group,” “adaptive recreation,” or “peer mentoring after brain injury” along with a city or state name can also help identify local opportunities for social connection and community participation.

Adaptive Recreation: Sam connected with peers through adaptive recreation opportunities offered by NeuroHope in Indiana. Individuals and families can learn about adaptive recreation programs in their area by contacting their local Brain Injury Association chapter or rehabilitation providers.

Vocational Rehabilitation: Vocational Rehabilitation (VR) is a federally funded, state-administered program that helps individuals with disabilities prepare for, obtain, maintain, or advance in employment. Services may include career counseling, job training, assistive technology, benefits counseling, education support, job placement, and supported employment services tailored to individual goals and support needs. Individuals can locate services through the Rehabilitation Services Administration State Directory or by contacting their state brain injury association or workforce development office.

Community Rehabilitation Providers: Individuals working with Vocational Rehabilitation are often referred to Community Rehabilitation Providers (CRPs), which offer services such as job development, job coaching, vocational assessment, skills training, transportation coordination, and long-term employment supports. Some CRPs specialize in serving individuals with brain injury. When seeking services, ask whether staff have experience or training specific to brain injury rehabilitation and support.

YMCA: Many local YMCA locations offer income-based financial assistance programs that reduce membership costs for individuals and families. People with Medicare may also qualify for free or reduced memberships through programs such as SilverSneakers, Renew Active, or Silver & Fit. Eligibility information is available through local YMCA branches or insurance providers.

LoveYourBrain: LoveYourBrain is a nonprofit organization founded by professional snowboarder Kevin Pearce following his traumatic brain injury. The organization provides research-based yoga, mindfulness, retreats, workshops, and peer support programs designed for individuals with brain injury and their caregivers, with an emphasis on resilience, emotional well-being, and community connection.

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Citations

Cicerone, K. D., Mott, T., Azulay, J., & Friel, J. C. (2004). Community integration and satisfaction with functioning after intensive cognitive rehabilitation for traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 85(6), 943–950. https://doi.org/10.1016/j.apmr.2003.07.019

Trexler, L. E., Waldron-Perrine, B., Cicerone, K. D., & Malec, J. F. (2019). Resource facilitation following brain injury: A review of the literature and practice recommendations. NeuroRehabilitation, 45(4), 483–499. https://doi.org/10.3233/NRE-192877