Patient & Researcher Blog
Here I aim to capture what I am learning as a newbie researcher from a patient perspective.
Living with a slow growing brain cancer
It is taboo for researchers to talk about their work before it is published.
I think that’s a bummer.
My favorite part about research is learning new things in real time. Here I share my observations as a learner and my n of 1 (personal) findings as a patient.
Note: I started blogging about brain cancer in 2008, at age 29.
I had no background or knowledge about healthcare when I began. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
F-ck Cars: Finding Freedom from Brain Cancer on Two Wheels
The bike? It’s my middle finger to the five-mile cage of restrictions I'm forced to live with. It’s the feeling of breaking out, of reclaiming space that’s been taken from me. Sure, a car can haul groceries within a five-mile radius, and I’ll appreciate it when the days get shorter and colder. But for now, it’s summer. I’m alive, my feet still pedal, and the wind on my face? It’s my anthem of survival. Fuck cars.
Adapting to life without driving: Navigating the gap between gas & brake pedals
The realization that adaptive features are not covered by insurance—medical or otherwise—highlights the societal belief that driving is a privilege rather than a right. Those with the greatest access to financial resources and time will be among the few who can reap the benefits from adaptive driving technologies. I can see myself advocating for and contributing to policy changes that challenge the perspective that driving is a privilege. And that first step may involve admitting that I have a disability in the first place.