The Story

The story behind this project

Adel’s Perspective (Father, Survivor, Caregiver)

At 17, I was in a devastating accident that left me with a below-knee amputation and a traumatic brain injury (TBI). I survived, but the road to recovery was long, hidden, and lonely. For years, I lived with symptoms that few could see and fewer understood. Just when life was settling, brain injury came back into my life in the most painful way—through my daughter, Sarah. At 12, she suffered a hemorrhagic stroke due to an undiagnosed birth defect ArterioVenous Malformation (AVM), followed by five brain surgeries that led to a complex, multi-stage acquired brain injury (ABI). Watching her enter adolescence with a broken brain and overwhelming symptoms was heartbreaking. But my own TBI had unknowingly prepared me to walk with her—not as a distant parent, but as a fellow traveler on the same difficult path. I became her advocate, her mentor, and her anchor. And as we rebuilt our lives, I gained deeper insight into the world of brain injury—not just from my experience, but from hers.

Now, as I grow older, I’ve come to realize that healing isn’t a straight line. Degenerative changes, brain shrinkage, and new tremor-related symptoms have emerged in my own life—reminders that brain injury can be lifelong and evolving. I also know that many survivors remain undiagnosed or misdiagnosed, especially when symptoms are mistaken for depression, PTSD, mental illness, or even long COVID. But I believe if the symptoms are real, the help must be real too—no matter the cause. So I continue to advocate. Because I’ve lived both sides—struggling silently with invisible symptoms and standing beside someone I love who was forced to do the same. I know this: survivors can’t always advocate for themselves. And that’s why I speak—for them.

Sarah’s Perspective (Daughter, Survivor, Expert)

At 12, I became a patient. A survivor. A girl with a brain injury and a future that no longer felt guaranteed. The hemorrhagic stroke changed everything—how I learned, how I moved, how I connected to the world around me. For years, I dealt with cognitive fatigue, seizures, and the deep loneliness of social isolation. But I was never completely alone. My father understood what it meant to live with a hidden injury, and he stood by me—not just as a parent, but as a mentor who had walked a similar road. His belief in me, even when the world said I couldn’t, helped me believe in myself. Against the odds, I pursued my dream of higher education. It took 13 years, many setbacks, and relentless determination, but I earned my Master’s and PhD in Psychology with a focus on brain injury and neurorehabilitation. My research focused on social isolation—not just because I lived it, but because I saw how devastating and widespread it was in our community.

Even now, seizures and fatigue challenge my independence. After graduation, I couldn’t drive or begin my postdoc as planned. But instead of letting isolation consume me again, I leaned into purpose. My research, my life, and my recovery became tools for helping others. Through this webspace and our Brain Injury Social podcast, I now have the chance to speak openly about the hard stuff—brain fog, memory loss, noise sensitivity, overstimulation, emotional burnout—and help others name and navigate their symptoms. We include not just TBI and ABI survivors, but anyone with brain injury-like symptoms, regardless of cause. Because brain injury doesn’t fit into neat boxes—and neither should recovery. My father and I have turned our experience into something larger than survival. This is about mentoring, support, advocacy, and creating tools that help others reclaim their lives, their purpose, and their voice.

Symptoms

Brain injury symptoms may include, but are not limited to, headaches, dizziness, nausea, fatigue, impulsive behavior, reduced inhibitions, brain fog, blurred vision, anxiety, memory loss, balance issues, hearing issues, dexterity, photophobia, changes to depth perception, decreased reaction time, clouded judgment, sensitivity to sound and light, low attention span, losing old knowledge, difficulty retaining new knowledge, decreased focus, sensory overload, brain processing jam, just to name a few.

Under-supported Cause

Brain injury is an under-supported cause, and brain injury survivors often don’t get the help they need. This is a much harder battle because the brain is injured, so they generally rely on others for help, as they don’t even know what they really need. We know this through much experience as a brain injury survivor, someone who provided support, and through education. But together, we can do better. There is no established or direct path from injury to symptoms to recovery, so those of us who lived through those significant experiences (injury, support, or both) are duty-bound to help others in need, and help those searching for answers. Through our podcast, and through this inclusive self-help webspace, we provide mentoring and support, advocacy and navigation, to help guide you through those challenging and often debilitating symptoms. We also advocate and shed light on essential tools that are needed throughout the healing and recovery journey, like support groups, proper nutrition and hydration, adaptive therapeutic activities, music and art therapy, using the natural outdoors for self-care, etc. Ultimately, during the brain healing and recovery process, our experience will help you establish achievable goals, maintain a safe and healthy lifestyle, and set realistic expectations on what the road to recovery will look like.