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At age 10, I underwent surgery to remove a brain tumor located near my cerebellum. What followed was a fight I didn’t fully understand at the time — bacterial meningitis, intensive recovery, and a return to school that felt anything but normal. For decades, I assumed I had moved on. But as an adult, I began noticing persistent challenges with attention, memory, and emotional regulation that couldn’t be easily explained. It wasn’t until a recent MRI that I learned part of my cerebellum had been removed — something I never knew. That discovery led to the possibility of a condition called Cerebellar Cognitive Affective Syndrome (CCAS), which reframed my entire life experience.
As a child, I wasn’t told much about what had happened. My family did the best they could to help me survive, but we didn’t have the tools or knowledge to understand the long-term effects. As an adult and a father, realizing that part of my brain had been removed without long-term follow-up or explanation shook me. It reframed years of unexplained challenges academically and emotional struggles, and led to a deeper exploration of invisible disabilities and how easily people like me fall through the cracks.
Healing doesn’t end after surgery. The long-term effects, especially when they’re cognitive or emotional, can be just as challenging as the physical recovery. I wish more people knew how many survivors live with invisible injuries that impact every part of life, from work to relationships. Recognition, understanding, and accommodations aren’t just helpful — they’re essential.
I want to help bridge the gap between medical survival and long-term support. I’ve spent my career working in healthcare policy and data, and yet my own story went undiagnosed for decades. That disconnect has shown me just how invisible many brain injury survivors remain, especially those who don’t fit into traditional narratives of recovery.
Now, I’m using my voice as both a professional and a survivor to advocate for policy changes, workplace accommodations, and broader awareness of conditions like Cerebellar Cognitive Affective Syndrome (CCAS). If my story can help even one person feel seen or push one system to become more compassionate and accountable, then it’s worth sharing.
I know my story of perseverance and resilience in life could be influential to others who are or have gone through a similar experience.
