Collective Grief

Yesterday, the amazing Kelly Grosklegs joined Laura Carfang and I for our biweekly conversation about issues that the Metastatic Breast Cancer (MBC) community faces, with a focus on end of life issues. Our subject this week was Grief and Laura titled our conversation a “Grief Circle,” which I love. The conversation was streamed live on SurvivingBreastCancer.org‘s FB page, which you can access here to watch at your leisure. As a side note, if you are not already following Conversations with Kelly on Facebook, you should definitely do that now. Kelly shares a great deal about grief and has a recurring Wednesday live discussion about lots of issues that are so helpful, whether you are living with MBC or not.

But back to the idea of a Grief Circle and the concept of Collective Grief.

For those of you who don’t know me, I read a lot. One of the books I read in 2020 was the Circle Way, which lays out a theory drawing from history and cultures not always celebrated or acknowledged in that there is no hierarchy in leadership, but a leader in every chair. The way they seat everyone in a circle in this method and have certain boundaries on discussion is to ensure that everyone is heard and no one takes over is just astonishingly significant in its simplicity. I’m probably over-simplifying this theory, of course, but it has really resonated with me, while stretching my ideas of leadership and of vulnerability.

This idea of sitting in a circle and supporting one another and there being time and space for everyone to be vulnerable and everyone to be heard and everyone to be supported is really beautiful and also scary. I was raised in and feel comfortable (to a certain extent) in a patriarchal culture, but that hasn’t always served me well, especially now that I’m facing a terminal cancer diagnosis. A dear friend, Amy Ellen, pointed out in this weeks grief webinar about how I don’t always reveal how I’m feeling in so many words because I’m still stuck in this patriarchal concept of the leader showing no weakness. As I shared yesterday, it’s also because I often need some time and space to work through how I’m feeling and I am most comfortable processing my feelings inwardly; at the same time, I know that showing my vulnerability allows those who love me to get closer.

I’m working on that because giving and receiving love is something I’m rather addicted to now that I see how important and VITAL it has been for me in the last few years in living with MBC.

Some time ago, when I was reeling after some deaths in the MBC Community, I wrote this blog post about grief. As I’ve come to understand the concept of Collective Grief, I realize now that that’s what I was writing about. There are pieces of grief that are about others dying or the loss of something that is also about losing oneself or parts of a life that one had. Since I am part of this MBC Community and grieve the losses in that community with other members of that community, grief takes on another layer, another poignancy that is often hard to articulate with any accuracy. It’s profoundness and depth are so valuable and yet often shocking and scary because they trigger our own feelings about our own deaths.

So much of living with MBC is about loss and grief and there is both comfort and intimacy about doing this very hard thing in community with others; as well as vulnerability. Death is, after all, a transition we will each take alone. In talking about these deep pieces of ourselves and our experiences, we strip bare a part of ourselves and our souls, which is not a comfortable thing for this introvert. Talking about these issues in confidential groups is one thing, talking about it more publicly is something else entirely.

And yet, I started this blog with a promise to be open and vulnerable about what I struggle with and this grief thing has been huge for me, whether I’ve always labeled it that or not.

Friday, March 19th, was both my eldest son’s 8th birthday and the first birthday after her death of Emily Garnett, a dear friend I’ve grieved and am grieving deeply still as we come up on the one year anniversary of her death this month. I wrote about that loss specifically in a blog post called “Love and Grief; Grief and Love” in April of 2020. In the last week or so, the MBC Community has been rocked with a death of a unicorn, Sandra Spivey, who lived over 20 years with MBC.

Needless to say, this discussion about grief yesterday was incredibly timely for me and so many others.

There is something special about grieving someone or something collectively. It gives such an opportunity to support one another, to not feel alone, to share the burden with others. I’ve definitely seen that there is no individual ownership of grief, that we all can miss the same person in a variety of ways, respecting, of course, that close family will be differently affected than those of us on the periphery. The grief resulting from knowing a part of someone online or from afar is no less valid to an individual as those closest to the person who has died, while culturally there are often roadblocks and stigma and the pressure to be quiet to overcome.

I think collectively grieving also grants a different permission to all of us to not be ok on a certain timetable. I’ve learned over the past few years that grief is not linear, it does not follow a timeline or a specific path, that it is cyclical and comes in waves and can be oh so different for different people and on different days. As those of us in the MBC Community walk the same or similar paths as those we’ve lost, there are grief minefields as well. Facing a scan or a met in a particular place or mets in another person in a particular way can provide a direct path to pain so deep it paralyzes. Leptomeningeal mets will always be a trigger for me and pull me back to the news after the Stampede in 2019 that Emily was diagnosed with mets in her cerebrospinal fluid.

Others will have different triggers, different minefields, different pain points; and yet, in essence, these reminders are part of us all, as a community. We see each other go through what will be our end. We see those that we connect with and love and cheer on and grieve with enter hospice and decline and die. The pain their family feels will be the pain that our families feel, some sooner rather than later.

How then can we not experience grief differently?

The extra layers are both unexpectedly weighty and also an opportunity for more intimacy with those we love.

I especially appreciate Jennifer O’Brien‘s, author of The Hospice Doctor’s Widow, point of view (she was also a guest on our webinar series) who has given us a glimpse in publishing her journal of that time with her husband as he was dying. She provides a roadmap not just for those of us attempting to visualize and plan for the end of life, but also for those who endeavor to support us in that transition.

And so, on this #MetsMonday, I am recommitting myself to entering into this experience of living while dying and traversing the minefield of knowing and loving those who also walk with me, with vulnerability and openness and honesty. Fair warning, I can’t always package these feelings into words or images that are comfortable. I veer into the darkness of the valleys of this experience regularly and have days when a silver lining is not only not in sight, but feels inconceivable. And yet, there are also those days when there is joy in every breath and I’m thankful for each second.

As Kelly reminded us, it’s not and/or, but both/and. We are all capable of holding the deepest despair and the most joy we’ve ever felt inside ourselves at the same time; this is what it means to be human. May today be a blessing to each of you and may you find yourself within the struggle, the highs and lows and may you meet others there who speak your soul-language.