Community, a Reboot

I've written before about community and the opportunities we have to support and lift others up, to share the hard-won information we have gathered during our time as a patient. During the pandemic, I thought about a different aspect of a community.

My dad and I had a conversation about it because there's always been this tension between me and my family about me leaving to go to conferences or gatherings out of town. I have two kids, and to abdicate my responsibilities to someone else does put a strain on my support system.

And yet, I travel to those conferences, those gatherings, because the men and women who also attend those conferences are my community. We are a community of terminal patients who have made the commitment to look beyond ourselves and our own experiences to what would benefit the community as a whole.

Our community is constantly changing as new men and women are diagnosed and as we lose to death many of our dear friends.  Our community is open and genuine and often so intensely vulnerable that people outside of our community are often not aware of how we can do this.

Relationships and connection

The bottom line is that the people and the relationships between people in the metastatic community make it what it is. I've often struggled with wanting to continue to engage with a community where everyone is terminal, where my heart is broken over and over with the loss of each incredible human being.

I find myself withdrawing and then re-engaging at times to protect myself. I think this is healthy as we all navigate this life with cancer and yet living.

Reconnecting with the metastatic breast cancer community

After I've taken a break, I always come back, I always reengage.I think I do this for a variety of reasons.

• First of all, because it feeds my soul to be around people who get what I'm going through without me having to say much of anything. I feel seen and I feel heard in a way that healthy people, even those people in my family who love me, can't.
• Secondly, I am a historian of sorts. I have known the people who have advocated during their lifetime and had it cut tragically short. I honor the memories of those amazing men and women by staying engaged, by not withdrawing permanently.
• Third and finally, I remember vividly what it was like to be newly diagnosed, to be thrust into the deep end, so to speak. I remember what it was like to be isolated and lonely and thinking I would die right away. My being alive, being an advocate, being a voice of education, that helps the newly diagnosed as well.

Speaking out about metastatic breast cancer

I'm often told that just by being alive, I give others hope. When I write about the community or how I navigate something that is difficult, I hear the same thing. When I talk about the options available to us and how various organizations step up to support us, I hear the same exact thing.

What is it about speaking up that gives others hope? I think it's because not many people are talking about it and that contributes to isolation, to a lack of community. A lack of community is like a lack of sunlight or water, you can deal with it for a while, but eventually, the ramifications are huge.

What are you doing to engage in your community?

What aspects of a community are important to you?

Is there something you want out of a particular community that you aren't getting?