This is a poem about living with ME/CFS and the void of any kind of feeling that can strike us during sick days/worse periods and how absolutely devastating and dehuhumanizing it can feel.

YouTube video by Whitney Dafoe

In memory of Maeve Boothby O’Neill b.1994   ME. 2008   d. 2021 Maeve died too young.  ME did not kill her.  Medical neglect did.  She was born a scholar and, by t…

A video exploration of the impossible decisions ME/CFS patients have to make, constantly having to decide between two options that will both make our health worse. And how much more difficult these d...

Before leaving the hospital I had some conflicting emotions about going home versus staying there. There’s something deeply cathartic about having a medical issue that’s known. You go to the hospital ...

In January this year I spent 3 weeks in the hosptial for a pretty serious infection and related conditions. My experience there was at once a surprise and a discouraging setback that added to my symptom burden. In this post I relate my experience and thoughts on what it means for all of us.