Each year in the United States, approximately 2.8 million people sustain a traumatic brain injury (TBI), and 3.5 million experience an acquired brain injury (ABI). Altogether, 13.5 million Americans live with the long-term effects of a brain injury, many of whom face profound challenges in daily life. Tragically, 1 in 4 individuals affected by brain injuries attempts suicide, often driven by the isolation and inequities in healthcare access that disproportionately impact underserved communities. This crisis is further compounded by a growing number of individuals experiencing brain injury-like symptoms, including a significant proportion of the 17 million people living with Long COVID and the 12 million living with PTSD, highlighting the urgent need for comprehensive support and intervention.
Our story -
The journey of my daughter, Sarah—a story of resilience, determination, and the power of shared experience. Sarah has been an exceptional student, bright and driven, even as a young girl. But at age 12, her life took an unexpected turn when she suffered a sudden hemorrhagic stroke caused by a genetic defect (AVM). This hemorrhagic stroke left significant cognitive and physical challenges in its wake, challenges that would shape her journey but never define her. Over the next 17 years, she endured five Gamma-Knife brain surgeries. All of this resulted in a multi-stage acquired brain injury (ABI).
Watching Sarah confront her teen years with a brain injury was heart-wrenching. She would face an unfamiliar and daunting reality, full of various symptoms and challenges, yet she approached each day with courage and grit. My own experience 20 years earlier gave me a unique lens through which to guide her. An accident that left me with a leg amputation and a long-term brain injury (TBI). Though challenging, it became an unexpected gift—one that allowed me to mentor Sarah through her ABI hurdles. Sarah later told me that this shared journey forged a bond of mentorship between us. But we both understand that mentoring is never one-sided; it is a mutual exchange of purpose and healing that strengthens both the mentor and the mentee.
Early in her recovery, doctors cautioned Sarah against pursuing her dream of higher education. The odds seemed stacked against her. Refusing to surrender her aspirations, we embarked on a 24-year academic journey marked by immense obstacles, including persistent symptoms and cognitive fatigue that significantly reduced her daily productivity and extended her time in college. But Sarah’s resilience and determination finally paid off when she earned her Master’s degree and, ultimately, her PhD in Psychology, specializing in brain injury and neurorehabilitation—a powerful testament to her strength and perseverance.
While Sarah’s journey through brain injury was marked by many trials, one of the most devastating consequences has been her seizures—both focal and grand mal. These episodes often left her exhausted and stripped her of independence, preventing her from driving at times and leaving her to battle the profound loneliness of social isolation. Yet, even in isolation, Sarah turned adversity into insight, devoting herself to the brain injury cause. She also became an expert in social isolation, by dedicating her thesis and dissertation to exploring its impacts and the nuances of social isolation and introverted behaviors.
Sarah completed her doctoral internship and dissertation under incredibly demanding circumstances, crossing the finish line to graduate in 2023. But life tested her again. An increase in seizure activity after graduation meant she couldn’t drive or begin her postdoctoral training. For 15 months, she faced isolation once more. Yet, instead of yielding to despair, Sarah channeled her energy into building a successful social and community network.
This time of reflection and resilience gave birth to a new purpose for us both. Drawing on our shared experiences and Sarah’s expertise, we joined forces to develop 2 nonprofit initiatives aimed at helping brain injury survivors and caregivers navigate the healing and recovery journey, and breaking the cycle of social isolation. Sarah’s journey is not just one of survival; it is a testament to the strength of the human spirit and the transformative power of shared support. Together, we are working to illuminate a path of connection, healing, and empowerment for others facing similar challenges.
Sarah's experience and research in both neurorehabilitation and social isolation, combined with my experience in adaptive sports, created this program. Sarah and I feel that our destiny was defined by our circumstances. But the need is great, and our personal resources are limited. So, please come join us and support our mission to end social isolation and help brain injury survivors and caregivers navigate their healing and recovery journey.
Our organization is all inclusive and our evidence-based programs are based on sound research.
Please also check out our BrainX podcast and our comprehensive self-help webspace for brain injury survivors and their caregivers, to help navigate the healing journey, manage those challenging symptoms, set realistic expectations, and shed light on essential tools that are needed throughout recovery. Here is the link: Brain Injury Online
Adel Shadi
