Weekly Update #51

Gosh, it has been such a whirlwind week.

Last Tuesday and Wednesday and I traveled to DC to speak at a symposium for leaders of healthcare systems in transformation. The work of the attendees and their panels were so inspiring – people who are using housing to improve healthcare, connecting the formerly incarcerated to healthcare, improving healthcare equity. My panel was on patients sharing their experiences and why healthcare systems should listen to us. It seemed incredibly well-received and I was pleased with what I was able to communicate.

The downside of this symposium was the dinner on Tuesday night. The speech was by a journalist and doctor about some case studies of hospitals handling crises on the scale of hurricanes. Some of these hospitals handled it well, and others really didn’t. It was excruciating to sit there and listen to a description of how doctors debated about whether to euthanize patients and ultimately did so. I was the only patient in the room, the only person who was picturing themselves unconscious in a hospital bed with a team deciding whether they should try to save or end your life. I was really disappointed in myself that I didn’t leave like I wanted to, that I prioritized not making a scene over taking care of myself. I was able to see the social worker at my cancer clinic later that week and we had a really good talk. She asked me what I would have done if my daughter was next to me uncomfortable like I was, and without a doubt I know I would have left that room, I have left other rooms to make her feel safe and I don’t care what anyone thinks about it. It was a real breakthrough to imagine doing that for myself, and when I am inevitably in another uncomfortable situation I feel more empowered to do what’s right for me.

On Sunday I had the silent retreat day of my meditation course. We alternated guided meditations and time on our own to have our own journey. I walked away with a greater appreciation for valuing the now over what I wish would be. It was easier than I imagined and than the instructor had warned us it might be. I spend a lot of time home alone in silence and I think that has served to prepare me for that aspect of the day. I am inspired to devote some days to silent meditation in the future.

Finally, my daughter celebrated her birthday last week. I have an 8 year old! It was a big week for her with birthday and Halloween and time change. We’re keeping things low-key this week while we all catch our breath.