My story

Hi, I'm Chaleb. 👋🏾

Let's see… I'm 22, and I live in Texas.

I've worn a lot of hats: 35L counterintelligence special agent, 13F joint fire support specialist, volunteer firefighter. These days I'm a biology student taking the long way, on purpose: part-time, online, and at a pace my body can actually keep. The long-term goal hasn't changed. I want to work in translational research on neurodegenerative diseases, in the space between a discovery in the lab and a treatment that actually reaches patients.

I'm also living with Friedreich's ataxia, a rare disease I'd been dealing with since childhood. For years, a lot of the symptoms were masked by a service-connected TBI, so getting a diagnosis took a while. What I learned on that road is how lonely it can feel. People can empathize with you, and that matters, but empathy isn't the same as understanding a lived experience. That gap is something I've struggled to put into words for years. This notebook is me trying.

So, anywho, this is my notebook. Some of it is about Friedreich's ataxia: the appointments, the research, the accommodations, the workarounds, the good, the bad, and the ugly. Some of it is school, faith, and the everyday stuff in between.

If you're here because you or someone you love got a diagnosis nobody's heard of, welcome. You're not alone. 🦓