Students Building a Supportive Community for Individuals with Brain Injury
By Tanisha Martheswaran, Olivia Okoli, Steven Meisler, Aubrienne Krysiewicz-Bell, Stephany Zhivotovsky, Mohammed Abuelem, Laura Tsai, Varshini Odayar
Between 1.5-2 million people in the United States sustain a traumatic brain injury (TBI) each year (National Institutes of Health, 1999), which leads to approximately 1.4 million ER admissions and 52,000 deaths annually (Faul et al., 2010). For mild TBIs, including concussions, the most commonly reported symptoms of TBI include poor memory, difficulties sleeping, and chronic fatigue (Lundin et al., 2006). These traits can be attributed to physiological changes such as irregular metabolism, alterations in cerebral ionic concentrations, diminished neurotransmission, and reduced blood flow to the brain (Iverson et al., 2005).
The physical symptoms- excruciating headaches, vision loss, nausea, etc - are only the beginning of the plethora of challenges that individuals with brain injury face during recovery. Suffering a brain injury can be a debilitating, frustrating, and isolating experience. As individuals cope with the short and long-term physical and cognitive effects of a brain injury, they can feel overwhelmed and disconnected trying to manage their career-related, social, and familial obligations. Oftentimes, they may have to sacrifice extracurricular activities or forego social outings, which previously provided them with a sense of community. This is why it is imperative that friends, family, and community members must actively try to support and uplift individuals with traumatic brain injury through building community, which is something that student-led organization Harvard Synapse aims to do.
Founded in 2019, Harvard Synapse strives to provide support and encouragement for individuals in our community living with brain injuries. Our work centers on building community, and increasing awareness for brain injuries. Through our speaker events, our new journal club, and collaborations with other Synapse chapters, we strive to promote education about brain injuries, and provide a platform for our members to share their experiences. Our Biweekly Peer Support groups enable us to foster a larger network of care and support for BI individuals. The Buddy Program enables us to develop closer one-on-one relationships, as it pairs students with our BI members, and meets once a month for reflections, games and creative activities. Our members describe these groups as meaningful ways to combat social isolation, uplift and encourage one another, and bridge gaps between generations.
For Betsy Bizarro, Massachusetts native and survivor of multiple traumatic brain injuries, engaging with Harvard Synapse’s now-virtual programs has given her something that was often difficult to find in a pre-virtual world - meaningful connections with individuals from diverse backgrounds and life experiences. “One of the things that these virtual groups have allowed me to see is how many interesting, gifted, and fascinating humans there are out there.” She especially loves interacting with students, whose “passions for cutting edge science, medicine, and activism” provide an invigorating sentiment of hope for all that is to come.
Even though she is now retired, Bizarro finds that our peer support groups provide her with structure, which coupled with opportunities for checking in and reflection invoke a profound sense of gratitude, a feeling that she believes should be an ongoing, integral part of life. Her most memorable experience with Harvard Synapse has been the “really lovely connection” that she has formed with her two student buddies, with whom she exchanges life stories, shares her love for culture, and engages in thoughtful conversation.
For the students who facilitate our support groups, the opportunity to build a community for individuals with brain injury has been an equally impactful experience. For Peer Support Group Director Stephany Zhivotovsky, running the Peer Support Groups has been one of the best experiences of her time at Harvard. “My co-directors and I really enjoy facilitating conversation and making a comfortable atmosphere for TBI individuals’ voices to be lifted and heard. It really has given me an internal perspective of the day-to-day struggles that individuals with brain injuries face, and it allows us to reflect, share, and confide in each other during the hour that we meet. It really means a lot to those who attend to engage in a variety of topic conversations that range from silly and lighthearted to serious, but uplifting and encouraging. We really try to create a space where everyone feels welcome and heard, and that has really stuck with me this past year.”
The shift to holding peer support groups virtually, though challenging, has made Harvard Synapse’s programming accessible to brain injury survivors from across the world, which has been incredibly valuable during this especially socially-isolating time. “My favorite memory during PSGs was when we held a self-love/self-care-themed meeting and everyone shared their routines- it really opened my eyes to a lot of little things you can do each day to care for yourself that make a positive impact on your mental/physical health. The PSG’s are important because not only do they allow for a space for sharing and reflecting, but they’ve also inspired the directors and those who attend to continue to fight and raise awareness for brain injury and those affected by it.”
Experiencing a traumatic brain injury can lead to a burdening accumulation of physical, social, and psychological effects that ultimately result in social isolation. The effects of TBI often go unnoticed or are underscored, especially when TBI survivors have a hard time expressing themselves. Harvard Synapse seeks to address these issues and combat social isolation through a multifaceted approach that involves educating the wider community about the nature of brain injuries, fostering a social support network for the millions of TBI survivors through peer support groups and student buddy programs, and most importantly, ensuring that their voices are heard.
About the Authors
Tanisha Martheswaran is a junior at Harvard College concentrating in Human Developmental and Regenerative Biology.
Olivia Okoli is a senior at Harvard College concentrating in Neuroscience.
Steven Meisler is a 2nd Year PhD student at Harvard University studying Speech and Hearing Bioscience and Technology.
Aubrienne Krysiewicz-Bell is a sophomore at Harvard College concentrating in Neuroscience.
Stephany Zhivotovsky is a sophomore at Harvard College concentrating in Neurobiology.
Mohammed Abuelem is a sophomore at Harvard College concentrating in Molecular & Cellular Biology.
Laura Tsai is a junior at Harvard College concentrating in History and Science.
Varshini Odayar is a sophomore at Harvard College concentrating in Neuroscience and Social Anthropology.
References
Consensus conference. Rehabilitation of persons with traumatic brain injury. National Institutes of Health Consensus Development Panel on Rehabilitation of Persons With Traumatic Brain Injury. (1999). JAMA : The Journal of the American Medical Association, 282(10), 974-983.
Faul, M., & National Center for Injury Prevention Control , issuing body. (2010). Traumatic brain injury in the United States : Emergency department visits, hospitalizations, and deaths, 2002-2006. Atlanta, Ga.]: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Injury Prevention and Control.
Iverson, Grant L. (2005). Outcome from mild traumatic brain injury. Current Opinion in Psychiatry, 18(3), 301-317.
Lundin, A, De Boussard, C, Edman, G, & Borg, J. (2006). Symptoms and disability until 3 months after mild TBI. Brain Injury, 20(8), 799-806.
The physical symptoms- excruciating headaches, vision loss, nausea, etc - are only the beginning of the plethora of challenges that individuals with brain injury face during recovery. Suffering a brain injury can be a debilitating, frustrating, and isolating experience. As individuals cope with the short and long-term physical and cognitive effects of a brain injury, they can feel overwhelmed and disconnected trying to manage their career-related, social, and familial obligations. Oftentimes, they may have to sacrifice extracurricular activities or forego social outings, which previously provided them with a sense of community. This is why it is imperative that friends, family, and community members must actively try to support and uplift individuals with traumatic brain injury through building community, which is something that student-led organization Harvard Synapse aims to do.
Founded in 2019, Harvard Synapse strives to provide support and encouragement for individuals in our community living with brain injuries. Our work centers on building community, and increasing awareness for brain injuries. Through our speaker events, our new journal club, and collaborations with other Synapse chapters, we strive to promote education about brain injuries, and provide a platform for our members to share their experiences. Our Biweekly Peer Support groups enable us to foster a larger network of care and support for BI individuals. The Buddy Program enables us to develop closer one-on-one relationships, as it pairs students with our BI members, and meets once a month for reflections, games and creative activities. Our members describe these groups as meaningful ways to combat social isolation, uplift and encourage one another, and bridge gaps between generations.
For Betsy Bizarro, Massachusetts native and survivor of multiple traumatic brain injuries, engaging with Harvard Synapse’s now-virtual programs has given her something that was often difficult to find in a pre-virtual world - meaningful connections with individuals from diverse backgrounds and life experiences. “One of the things that these virtual groups have allowed me to see is how many interesting, gifted, and fascinating humans there are out there.” She especially loves interacting with students, whose “passions for cutting edge science, medicine, and activism” provide an invigorating sentiment of hope for all that is to come.
Even though she is now retired, Bizarro finds that our peer support groups provide her with structure, which coupled with opportunities for checking in and reflection invoke a profound sense of gratitude, a feeling that she believes should be an ongoing, integral part of life. Her most memorable experience with Harvard Synapse has been the “really lovely connection” that she has formed with her two student buddies, with whom she exchanges life stories, shares her love for culture, and engages in thoughtful conversation.
For the students who facilitate our support groups, the opportunity to build a community for individuals with brain injury has been an equally impactful experience. For Peer Support Group Director Stephany Zhivotovsky, running the Peer Support Groups has been one of the best experiences of her time at Harvard. “My co-directors and I really enjoy facilitating conversation and making a comfortable atmosphere for TBI individuals’ voices to be lifted and heard. It really has given me an internal perspective of the day-to-day struggles that individuals with brain injuries face, and it allows us to reflect, share, and confide in each other during the hour that we meet. It really means a lot to those who attend to engage in a variety of topic conversations that range from silly and lighthearted to serious, but uplifting and encouraging. We really try to create a space where everyone feels welcome and heard, and that has really stuck with me this past year.”
The shift to holding peer support groups virtually, though challenging, has made Harvard Synapse’s programming accessible to brain injury survivors from across the world, which has been incredibly valuable during this especially socially-isolating time. “My favorite memory during PSGs was when we held a self-love/self-care-themed meeting and everyone shared their routines- it really opened my eyes to a lot of little things you can do each day to care for yourself that make a positive impact on your mental/physical health. The PSG’s are important because not only do they allow for a space for sharing and reflecting, but they’ve also inspired the directors and those who attend to continue to fight and raise awareness for brain injury and those affected by it.”
Experiencing a traumatic brain injury can lead to a burdening accumulation of physical, social, and psychological effects that ultimately result in social isolation. The effects of TBI often go unnoticed or are underscored, especially when TBI survivors have a hard time expressing themselves. Harvard Synapse seeks to address these issues and combat social isolation through a multifaceted approach that involves educating the wider community about the nature of brain injuries, fostering a social support network for the millions of TBI survivors through peer support groups and student buddy programs, and most importantly, ensuring that their voices are heard.
About the Authors
Tanisha Martheswaran is a junior at Harvard College concentrating in Human Developmental and Regenerative Biology.
Olivia Okoli is a senior at Harvard College concentrating in Neuroscience.
Steven Meisler is a 2nd Year PhD student at Harvard University studying Speech and Hearing Bioscience and Technology.
Aubrienne Krysiewicz-Bell is a sophomore at Harvard College concentrating in Neuroscience.
Stephany Zhivotovsky is a sophomore at Harvard College concentrating in Neurobiology.
Mohammed Abuelem is a sophomore at Harvard College concentrating in Molecular & Cellular Biology.
Laura Tsai is a junior at Harvard College concentrating in History and Science.
Varshini Odayar is a sophomore at Harvard College concentrating in Neuroscience and Social Anthropology.
References
Consensus conference. Rehabilitation of persons with traumatic brain injury. National Institutes of Health Consensus Development Panel on Rehabilitation of Persons With Traumatic Brain Injury. (1999). JAMA : The Journal of the American Medical Association, 282(10), 974-983.
Faul, M., & National Center for Injury Prevention Control , issuing body. (2010). Traumatic brain injury in the United States : Emergency department visits, hospitalizations, and deaths, 2002-2006. Atlanta, Ga.]: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Injury Prevention and Control.
Iverson, Grant L. (2005). Outcome from mild traumatic brain injury. Current Opinion in Psychiatry, 18(3), 301-317.
Lundin, A, De Boussard, C, Edman, G, & Borg, J. (2006). Symptoms and disability until 3 months after mild TBI. Brain Injury, 20(8), 799-806.