Disenfranchised Grief

Last updated: October 2021

I had posted recently on Facebook some pictures that popped up in my memories of some sweet time in Washington, DC back in October of 2019 when advocating with other MBC patients with the Metavivor Stampede on Capitol Hill and reading in the play, IV Our Lives. What happens a lot in our community is that the pictures included people who have since died. While these memories are extremely precious and are, in some ways, all that remains of treasured friendships, they are also bittersweet. When I posted, a dear friend and fellow contributor, Alyson, commented that when she was recently struggling with this, and her counselor, who is also a chaplain, told her it was called "disenfranchised grief."

Experiencing grief and loss from MBC

I'd never heard this term before, but Alyson explained that when a person with whom we have developed a deep and close bond does not live near us or we don't have connections to the family of that person as well, we are often disconnected from the "expected" grief rituals and are often left bereft of ways to communicate that grief. Also, that when our grief isn't "normal" or mainstream or doesn't end quickly, there is a social stigma or maybe a disconnection from that experience. This resonated so much with me and giving a label to something is often so much more helpful than I've ever realized.

I vividly remember when the first person I'd only met online through a metastatic breast cancer group died. We'd been paired as sister buddies and "spoke" mostly online via email or text. We often exchanged messages late into the night about whatever was on our heart and soul and as she declined, she told me vividly what dying was like. When she died, at home, and with her family just as she wanted, her family decided to remove her profile from Facebook. I'd only communicate peripherally with some of her family and I wasn't friends with any of them on social media. I felt extremely awkward and the fact that I was grieving too felt nearly voyeuristic as I scoured the internet for news about her service and details. No one did anything unkind to me and this isn't an indictment of how her family handled it, I was simply left bereft of a way to mourn.


As I often do, I wrote about it, I've said her name, I've found ways to keep her legacy alive in my own life.

But it was never enough. I never got the closure I needed and it really affected me for a long time in how eager I was to get another sister buddy or to develop another close relationship with someone who is also terminal. I suppose it would be accurate to say that I have a scar in my own heart and soul where that connection was.

Since that experience, which was a few years ago now, I've tried to figure out how better to do this grief thing when the people I'm developing relationships with are mostly pictures on the computer or occasionally zoom video or text exchanges when people who mean a great deal to me are involved in just one facet of my life. I've come up with a few things, but the whole purpose of writing about this is to get YOUR ideas. None of us know how to do this, there is no script, there's no class, this is weird and hard and really not mainstream. Here is what I have started doing:

  1. Friend Family Members on Social Media - It may seem weird, but I've started friending the husbands or close relatives of the people I get close with. Those requests are usually accepted and that gives me a window into what's going on if the loved one stops posting. Usually, a loved one will at least provide some updates. This gives me the added opportunity to be as supportive as I can from afar for the loved ones after a dear friend has passed. Is this helpful to the loved ones? I don't know, but I have been able to walk quite a few widowers through the unpleasant documentation and telephone calls after death when it comes to creditors, which helps me know that I can offer something concrete. I've seen and participated with others in sending flowers or raising memorial funds or to help with funeral costs.
  2. Talk about Preferences Before Hospice - There is one excellent Facebook page for MBC patients either wanting to or needing to talk about End of Life Issues. As many discuss regularly in that group, very few family members want to talk about the wishes of the dying person, especially towards the end. Those of us in the same boat are uniquely qualified to talk through these details and understanding the loved one's preferences are so important. This helps with the person not just disappearing one day and not knowing why until the obituary shows up.
  3. Angels - In one Facebook group that I admin, we have a folder of the pictures of the members who have passed, we call them Pink Angels in our group. At the Metsquerades, there are often Angel tables, honoring the local losses and maybe a slide show of their pictures put to music. In these formal settings, we say their names, we honor their legacies, and we acknowledge their lives.
  4. Honoring a Legacy - In my opinion one of the best examples of honoring a legacy is the GRASP program. The program keeps patients connected by sponsoring advocates to attend SABCS and participate in GRASP. Amanda's picture of who the program is in memory of is on their logo, and every single poster has her name. Each of the doctors and researchers is told her story, how she loved the poster sessions, how she interrogated doctors to get questions answered, and constantly advocated for brain mets patients to be included in trials. She lives on through that program.
  5. Sharing Their Story - On anniversaries or when pictures come up in memories, I see others share the stories of those we have lost. On this page, we have the articles of those advocates we've lost in their own area so that we never forget their contributions. Sharing the story of those we've lost keeps their memories alive in us and through us.
  6. Taking on Projects - When an advocate dies, their expertise and passion have often been poured into a project that is uniquely suited to them.  Sometimes, those projects die with them, but sometimes another member of the community picks it up in their honor.
  7. Incorporate Faith Rituals - My friend Alyson told me about the Kaddish, prayer in Judaism to honor those who have died. I know others who keep pictures up beside alters or wherever/however they pray. I've attended yoga sessions where we honored and remembered those we've lost and sent our energy to them and their loved ones. Whatever your faith, whatever your method, incorporating the ones we've lost in this meaningful way can help with the connection and keeping their memory alive and fresh.
  8. METup Die Ins - Each year at the METup Die Ins in DC as part of the Stampede and at the LBBC conference, we make an effort to say the names of the men and women we'd lost since the last Die In, we ring the gong to represent the number of men and women who die every day in the US, and we hold up signs with the names of the people we know have died. These actions, involving touch and sound are extremely meaningful to everyone involved.

Dealing with death from MBC

I read something once that there are three deaths: 1) when the body itself ceases to function; 2) when the physical body is buried; 3) when we no longer say the person's name. COVID-19 and distance have taken away our ability to participate in the second death, but we can say the person's name. Alyson shared with me that she planted some trees in Israel for some dear friends she's lost. I work hard to say the names of the people I've lost, especially when I'm missing them or thinking of them.

I find myself thinking - Is it enough? Do these rituals help?

Death rituals and rememberance

I know that some of these things have helped me, but it seems that a piece is missing, a part that could help. I don't know what that is. Alyson and I have talked about some images that resonate -- the Vietnam Wall, the list of names on the front page of The NY Times of the people who have died from COVID, empty shoes to memorialize the healthcare workers who have died while saving others, Arlington Cemetery with all of the crosses, the tomb of the unknown soldier, there are so many examples of physical memorials to think about.

But what says "MBC"?  What would honor the men and women we've lost?

So, I turn to you, our community.

What can we be doing to remember our lost friends? What can we be doing as a community to keep their memories, their legacies alive?

My ears are wide open. Thanks for sharing!

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