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.

If it’s too hard to use your right hand, use your left. If it feels really hard today, you are making progress for tomorrow (it gets better and you get stronger). Don’t be sad at what you lost, because you are rebuilding, always becoming something greater than before.

This article describes the work I have been doing to redefine the patient role in health care, research, and medical education… I felt validated to be featured here after the last year of my life where I faced a lot of unseen challenges.

A Perspective I wrote about shared decision making during awake craniotomy (brain surgery) was published a few weeks ago in the New England Journal of Medicine (NEJM). I am over the moon excited. From concept to publication, it took eight months for this Perspective to be published in the journal.

There exists no population-level evidence that taking the drug for that length of time is beneficial to the overall survival of people living with my disease.

I still have a grade 2 astrocytoma. This is great news, however if the last few months tell us anything, despite pathology and all the science my tumor is not behaving like other grade 2 astrocytomas. This is what continues to worry us but we take the positive and move forward.

It has been two weeks since my fourth neurosurgery… As I review old videos catalogued on external hard drives (not to mention the hundreds of blog posts that exist on this website), what is becoming more clear to me is that I’ve always viewed this brain tumor adventure through a lens of adventure and self-discovery.

I know there are many weeks left to healing, but if you didn’t tell me I had brain surgery six days ago I’d be ready to roll into work on Monday morning at full speed.

The tumor tissue samples resulting from surgery were generally favorable—this is good news, but also not what we were expecting. We continue to see grade 2 astrocytoma—which is amazing, but also kind of unbelievable after 14 years of living with a malignant brain tumor. The tumor board decided to proceed with further analysis of the tissue; updated results will be available in the coming week(s).