After nine years of working at the intersection of patient advocacy and health services research, this is my last week with OpenNotes at Beth Israel Deaconess Medical Center. Over these nine years, my role transformed. When Cait DesRoches offered me a job, I had no idea it would be the longest job I’d ever had, or that it would lead to a vision of what I would do next.

I have a status update on the driving-front! I wrote last fall about going back to school. What I didn't say explicitly then is that I couldn't have committed to that decision without knowing I could physically get there.

I use every tool at my disposal to make sense of the messiness of living with brain cancer. I don’t recommend this approach for everyone. My hope is that models like ChatGPT Health can help regular people become more curious about their health, learn to ask informed questions, and feel more prepared for their medical visits.

As someone who has spent nearly two decades experimenting with digital health tools—personal health records, tethered portals, wearables, symptom trackers, oncology apps, research dashboards—I was excited to see what Health GPT could actually do for me.

If you are looking for an obituary, official words, or a journalistic remembrance, I’ll point you elsewhere. What you’re going to get from me instead is something different: a first-person account from a fellow brain cancer patient-advocate who had the privilege of walking alongside Adam Hayden for nearly nine years. Also, don’t expect me to write as eloquently as Adam did. Few people could.

After eight years in health research, I’m going back to school to finish my bachelor’s degree—and, who knows, work toward a PhD? For now, it’s a three-year, self-funded “research sabbatical” with big goals, tight budgets, and a lot of heart. I’m scared, excited, and ready. So why am I doing this now?

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.

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.

Earlier this year I was on a roll. I had just finished chemotherapy (again), and was up for an appointment at Harvard Medical School. Things were looking favorable for me. A patient perspective at a medical school just might become a reality! Except it didn’t.