I was struggling recently over the anniversaries of the death of several members of the Stage IV Metastatic Breast Cancer (MBC) community and a dear friend, Alyson, shared with me her working knowledge of this concept of “Disenfranchised Grief.” Alyson Tischler is a fellow MBC haver and is just generally a really cool person. She’s also writing for AdvancedBreastCancer.net with me and you can read her profile and articles here.
I’d never heard of the term “disenfranchised grief,” but as soon as I started reading about it, so much that I’ve been struggling with made so much sense. I included a link above to a great discussion about this concept, but my own definition is as follows:
“Sometimes the relationship you have with a person virtually or in a particular context means that you aren’t a part of that person’s life as a whole. If that person dies, the traditional grief rituals that would help with processing that grief are often unavailable. When this happens, there is no outlet for the grief and the grieving person is left with a gnawing sense of loss without a tangible way to express it.”
I vividly recall the death of my original sister buddy, Kari Rousch, and how I felt so awkward with her family. My grief was real and it was significant to me; yet, I didn’t know them well enough to clearly articulate what I was feeling and I ended up feeling like a voyeur or a crasher in the midst of their grief. When they eventually decided to take Kari’s Facebook page down, I was left bereft of even that link with her. It would have been entirely inappropriate of me to say something about this to them–she didn’t belong to me, she belonged to them. Yet, I felt bereft and I didn’t know what to do about that.
I’ve endured the loss of other friends, dear friends, and most recently, the death of my best MBC friend, Emily Garnett. I wrote a post about that loss as well, titled Grief and Love, Love and Grief. Even with the time I’ve had and the experiences I have under my belt, this disenfranchised grief stuff is HARD.
Back to my discussion with Alyson about disenfranchised grief … we started talking about the need for individual rituals and also larger rituals for the MBC community as a whole. As we brainstormed, I started getting more excited about the concept. So, we gathered some advocates together in a FB messenger chat to further discuss ideas and to continue to refine the original concept. We’ve been kicking around a lot of details and ideas together. Alyson and I spoke with Kelly Groslags this week to get her input too.
We have pretty high aspirations and have lots and lots of ideas about grief rituals and how best to help each person in and connected to the MBC community deal with and work through their grief.
What I need from you, dear readers, is your ideas. We want to have multiple levels of this project, from the in person nationally, to locally, to virtual resources and places to memorialize all the dear men and women we lose at the rate of 116 people per day in the US. Please tell me!!