By Abigail Johnston
When I was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in 2017 at 38 years young, my legacy was literally the last thing on my mind. Every bit of energy and focus and brain cell were focused on staying alive, on figuring out the diagnosis and learning everything I could about breast cancer.
Now, five (5) years later, I’ve crossed over into semi-unicorn territory and finally got a scan that showed the cancer in my body is no longer active a/k/a No Evidence of Active Disease (NEAD). In this season of less stress attached to medication and worry about progression, I’ve had the opportunity and space to think more about my legacy.
And when my father in law died recently and we spent a long time talking about him and his legacy, it got me thinking even more about mine. What will be my legacy? What will live on after I’m no longer in this physical body?
When Lisa Laudico died recently (she so-founded the @OurMBCLife podcast, among other advocacy efforts), I started thinking more about my legacy outside my own family and what happens within the MBC Community. For those of us immersed in Advocacy, what will others remember about us when we’re gone? How can we in the Community remember and honor those who have died?
So, what is a legacy in the context of MBC?
In researching the definition, I came across many different perspectives, but the one I’ve settled on for myself is this: Legacy is simply what we leave behind when our lives are over. What we leave behind can be 1) people (family and friends); 2) words/writing; 3) items (property and other things); 4) programs (like SBC); 5) Advocacy efforts that bear fruit later; and so much more. What each person leaves behind as a legacy is as individual as we each are people. One piece of my legacy is the germline mutation (ATM) that I may or may not have passed on to my boys, which isn’t something that isn’t a positive to me, but I am thankful that many of my family members have been able to discover whether they too carry the mutation and to take action, as necessary.
Here’s what I think we each can do when it comes to legacy:
1. Think about our individual legacies and plan for it. This could mean writing down family traditions or stories; this could be pre-planning for funeral services or pre-paying for a burial plot; this could be writing letters or cards for special days we won’t be present for; this could be creating a box with items that may help our loved ones recall better days; this could be taking professional pictures regularly so that there is a visual record of us with our families; this could be recording a legacy video; this could be anything that makes sense to you.
and
2. Honor and celebrate the legacies of others. I think we do a pretty good job of this in the MBC Community as we honor the lives of those who have died, but I think we can think of ways to do this even better. My dear friends at GRASP (www.GRASPCancer.org) do an amazing job of honoring research advocates during each session — pictures and stories of research advocates are shared as we prepare to review the science that lives on through their efforts
I also wanted to highlight two things that each of us can do towards our legacies this month because I know it’s hard to know where to start sometimes.
First, for you writers, one of our partners, April Stearns over at Wildfire (www.WildfireCommunity.org), is offering an amazing opportunity to write about legacy. There will be a special issue with the theme, Legacy Stories. The categories are: 1) stories and people from the past; 2) The Present moment; the way we live today; and 3) The Future. For the submissions, you would select one of these categories to write about and send your submission to: editor@wildfirecommunity.org. The deadline is Thursday, August 25, 2022.
Second, for anyone living with MBC, we have our inaugural quarterly MBC workshop focused entirely on legacy on August 27, 2022 from 1-3 p.m. Eastern. This workshop is designed and hosted by the MBC Leadership team and is focused on writings, legal planning, and legacy videos. We hope that this will give everyone a starting point and a safe place to talk about plans you might already have in place. All of the attendees will receive a handout (currently more than 20 pages!) of information we’ve gathered, checklists and resources after the workshop. Learn more and sign up on our Events page! And watch for the next workshop, focused on mindfulness, that we will have during the often difficult month of October.
If you have a suggestion for a future MBC workshop, please don’t hesitate to let us know!
I’d like to leave you with this thought — a legacy doesn’t have to be big and splashy like getting your name on a building or $$ left to those we leave behind. Our legacies are what is left once we leave this earth and I suspect our greatest legacy will be the people we’ve touched in some way. As I heard the stories about my father in law at the recent service honoring his life, it was the things he did every day and were just part of who he was, that people most remembered and celebrated.
So, let’s be intentional and carefully consider what we will leave behind as we go about this living while dying experience with MBC.
Other Resources:
MBC Grieving Together Facebook Group (https://www.facebook.com/groups/597683717601254)
GRASP; Guiding Researchers and Advocates to Scientific Partnerships (www.graspcancer.org)
Wildfire (wildfirecomunity.org).
ProjectLifeMBC.org (Legal Clinics each month and ongoing conversations on legacy)
Five Wishes (https://store.fivewishes.org/ShopLocal/en/p/FW-MASTER-000/five-wishes-paper)
