Working to Replace Ourselves
For the second year, I was able to attend the Stampede, which is an effort by Metavivor towards legislative advocacy, and the Die-In, which is a form of a sit-in protest, organized by METup, in Washington, D.C. This year, an additional element was added, the reading of the play, IV: A Documentary Intervention, by Andrew Silver, the widower of Anya Silver, the poetess, who died of Stage IV metastatic breast cancer in 2018.
Living with a terminal diagnosis
It's hard to find the words to adequately explain how meaningful it is to be among the community of people who understand the experiences of living with a terminal diagnosis. Conversations become shortened to topics and words that everyone just understands. It is bittersweet at times, remembering the people who have been with us in DC before but who are no longer with us. My husband accompanied me last year and this year--for a caregiver, it is a meaningful event also and he is able to see, first hand, that others are having very similar experiences to our family.
Survivor vs. metavivor
Something happened this trip that made the experience even more meaningful. An early-stage supporter who attended the event last year came up to me and shared something with me. She told me that last year she had attended for the first time and was apprehensive about how she would be received since she is not metastatic. She and I randomly had a rather lengthy conversation before the march and we've stayed in touch since. She learned, from our conversation, that she could support metastatic patients by showing up, listening and loving on them. Such a simple thing and yet so profound.
Isn't that what we all need? Someone, to show up, listen to our experiences and love on us?
It hit me hard after that conversation that this early-stage friend of mine is going to outlive me. She will be left behind to advocate for what other metastatic breast cancer patients need. She is a very different audience than the legislators, researchers, donors, etc., that we often think of persuading, yet, her impact is no less important. Early-stage patients, many of whom understand quite vividly that they have a 30% chance of becoming metastatic, can be some of the most enthusiastic recruits to the cause. Why? Because they've had many of the same or similar experiences as those of us with metastatic cancer and they get it better than anyone who hasn't ever had a serious illness could, yet they have a much longer life expectancy.
"I want to replace myself"
Sometimes it's hard to know what to focus on. There are so many things that could be done, yet no one has the time to do everything. My conversations in DC have given me a new goal, something perhaps more achievable than many of the other things I do all day long: I want to replace myself. Yes, my relationships with metastatic sisters and brothers are incredibly meaningful and I wouldn't give them up for anything. However, I've also discovered that I can make a lasting impact by replacing myself with early-stage men and women, healthy men and women.
Words to remember
I will leave you with one of the readings I was honored to perform from Anya Silver's amazing poetry. Her words resonate so much with me and I've had the best time learning more about her and immersing myself in her poetry.
Caregivers: Do you practice self-care?