This year was the second time that my husband, Elliot, and I went to DC for the Metavivor stampede and the METup Die In. Last year, we were nearly entirely focused on the Die In and I think we didn’t enjoy the time as much. This year, we had a very different experience.
I think part of it was that we had an idea of what was going to happen, what we were going to do and who we were going to talk to. Definitely a part of it.
I think part of it was that we knew a lot of the people who were there. In fact, it felt a little like a reunion of sorts at times. There were people there I’d met only last year and have stayed in contact via social media since. Definitely a part of it.
I think part of it was that we had another project we spent time on, the reading of the play, IV. The entire cast played double duty during the events in DC, going back and forth between trainings and preparation for the planned advocacy and rehearsals. Definitely a part of it.
I think part of it is that I’ve grown up a bit in my advocacy for MBC, I’ve learned more about living with this disease. I’ve met others who are living with MBC, I’ve heard their stories and, some of them, I’ve had a part in intervening to help them. Definitely a part of it.
Unlike last year, I had met and gotten to know many of the women we lost since the event last year. The names we held up during the Die In to commemorate the ones we lost were a lot more personal this time. I could visualize the faces, remember the stories, the experience of learning about them, hugging them.
That definitely made a difference this year.
Sometimes advocating for research and those living with this insidious disease can feel hopeless. For instance, we were advocating for the passage of some of the same bills we asked to be passed by Congress last year. Doesn’t feel like we’ve made much progress, at least in that example.
And yet, we’re having conversations with people who matter about things that matter. Those conversations happen daily now, for me.
What I do know is that our efforts do not come back void. Conversations are happening. Some people appear to be listening. I hope so. The only thing we can do is continue to raise our voices, continue to bring awareness to our experiences. Is it enough?
I can only hope so.
Elliot came along this year as he did last year and I can’t say enough about how grateful I am to be doing life with this man. He doesn’t complain (much) about all of the crazy adventures I cook up and he not only comes with me, but he jumps in to help. I am very aware of how blessed I am to have a partner who is all in, no matter what, and who honors his wedding vows because he meant every word. I don’t thank him enough.
In May of 2019, I received a message from Laura Kompanik, on the right side in the picture above. She told me that she’d read my blog and wanted to talk to me about writing for advancedbreastcancer.net. I’d not heard of it at that point and when I looked it up, I saw my dear friend, Emily Garnett, in the middle of the picture above, is also writing for them. So, I sent her a message to gauge her experience and the rest is history! I’ve been writing for ABC since May and have found another amazingly supportive community. Laura took a train from where she lives to participate with us in the march and Die In. That’s commitment!! HealthUnion, the owner of ABC, has over 20 other disease specific sites (they call them all chronic, but most of you know how I feel about calling MBC chronic) and they are an amazing company to work with.
So, will I go back to DC in 2020 for a third time? It’s a possibility if the state specific stuff I’m plotting doesn’t pull me away for October. What I do know is that I cherish the time I’ve spent in DC the past two years, the people I’ve met, and the sense of fulfillment I’ve felt while participating.