Thousands gathered in Tampa to walk for memory, hope, and healing. I walked for survivors, caregivers, and those still searching for clarity.
Last weekend, I joined the Walk to End Alzheimer’s. I walked for those who forget, and for those who fear they might. I walked for brain injury survivors—like me—who live in the gray space between recovery and risk, clarity and confusion. And I walked for my wife’s father, a Vietnam veteran recently diagnosed with dementia, who’s now navigating the slow erosion of independence and identity.
His diagnosis has added more to my wife’s plate—emotionally, logistically, spiritually. She’s stepping into a caregiving role that’s both familiar and heartbreaking. Watching her care for him reminds me that dementia doesn’t just affect the person diagnosed—it reshapes entire families. It tests patience, memory, and love.
My aunt also lived with dementia. Her decline was slow and painful. She was once sharp, vibrant, and full of stories. Over time, those stories faded. Her sense of time unraveled. Familiar faces became strangers. And yet, even in those moments of confusion, there were flashes of joy, humor, and love.
Their journeys, along with my own as a brain injury survivor, remind me that memory loss isn’t just a medical condition—it’s a family experience. It reshapes relationships, roles, and routines. It forces us to confront what it means to remember, and what it means to be remembered.
The Overlap We Don’t Talk About
Most people don’t realize that traumatic brain injury (TBI) can increase the risk of Alzheimer’s and other dementias. Moderate to severe TBIs may double or quadruple that risk. Even repeated mild injuries—like concussions—can trigger long-term neurodegeneration. For survivors, this means we’re not just healing from the past—we’re navigating a future filled with unanswered questions.
Confabulation: The Memory That Lies Without Lying
One of the most disorienting effects of brain injury is confabulation. It’s not lying. It’s the brain trying to fill in memory gaps with false details—details that feel completely real. You might remember a conversation that never happened, or react to a situation based on a memory that’s inaccurate. And when someone corrects you, it doesn’t feel helpful—it feels like they’re rewriting your life.
Confabulation can be verbal (“I went to the store yesterday” when you didn’t) or behavioral (baking a birthday cake for someone whose birthday was months ago). It’s not something you can control. It’s not something you can always recognize. And it’s not something most people understand.
When Memory Misleads, So Can People
After my brain injury, I struggled to piece together timelines, relationships, and conversations. I couldn’t always remember who knew what, or how close someone really was to me. That confusion made me vulnerable—not just to memory lapses, but to misplaced trust.
There were moments I felt misled by people who claimed deeper connections than they had. And because I couldn’t always verify my own memories, I sometimes believed them. I shared personal details, leaned on the wrong shoulders, and unintentionally hurt friends who had truly been there for me—friends who had to remind me of the history we shared.
It’s hard to admit. But it’s real. Confabulation doesn’t just affect how we remember—it affects how we relate. It can distort our sense of loyalty, intimacy, and truth. And when those distortions collide with the intentions of others—well-meaning or not—the result can be painful.
Why We Must Advocate
This is why I walked. Because no one will advocate for brain injury survivors unless we do it ourselves. We need research that includes us. Therapies that understand us. Communities that support us. And we need to speak up about the invisible symptoms—like confabulation—that shape our daily lives.
A Call to Fellow Survivors
If you’ve experienced memory gaps, confusion, or confabulation, you’re not alone. Track your symptoms. Seek neuropsychological support. Use planners, photos, and trusted friends to help anchor your reality. And most importantly, share your story. Because every time we speak, we make space for understanding.
Even when memory fails, purpose remains.
Walking with purpose—and with my fraternity. As a member of Alpha Phi Alpha, I carry the legacy of service, scholarship, and advocacy into every step I take for brain injury survivors and those facing dementia.
