This post was re-published on Medium for the End Well Project
As a brain cancer patient for over fifteen years, I’ve lived with an acute understanding of my mortality. In many ways this has been a blessing. It’s taught me to strive for the cliché: to live life to the fullest and truly embrace the present.
Yet recognizing the fragility of time can sometimes be a lonely place. For some reason, not a lot of people like to talk about death (insert sarcasm here). When Shoshana Ungerleider asked me to be an ePatient Ambassador for EndWell 2018, I didn’t really know what I was getting myself into. What I quickly realized, however, was that this was an opportunity for me to share in conversations about death without having to coat it with rainbow sprinkles.
Yesterday’s event felt like a home away from home. Just one day after receiving an immunotherapy infusion for my experimental treatment, it was a space where I could be part of a community that understands a simple truth: talking about what it means to end well helps us all to live well.
Every cancer patient I’ve met has thought about “the end,” yet they don’t have an outlet to talk about it. Even as a medical student, I’m immersed in a field where discussing death is often avoided. Whether or not you’re currently ill, we’re all going to die at some point. So why aren’t these conversations the norm?
Thinking about what it means for each of us to end well reveals our true values. Imagine the possibilities for human connection if we all took the time to sit down and have these conversations.
Yesterday was the exception, but hopefully it’s the start of a much larger culture change. One that is inclusive, that as Alicia Garza pointed out, recognizes the intersectionality with so many other equity and justice movements. The first step towards change is bringing yesterday’s energy beyond the walls of the Symposium.
I think Jeremie Saunders of sickboypodcast said it best: 1) It pays to be vulnerable. 2) Life is too short for small talk. 3) Everyone has an incredible story to share.
I will continue to share my story for however long I can, and I can’t wait to listen to so many others’ stories.
Thank you to everyone who prioritized their time to be at EndWell; thank you to all the speakers for your inspiration; Thank you to my fellow ePatients and eCaregivers; and thank you to Shoshana for lighting the match.