The Pros and Cons of Community

I’ve written before about the benefits of the Metastatic Breast Cancer (MBC) Community as well as the cons that we often experience due to the cliques and other struggles. I just wrote again about how often those of us who are hurting then hurt others. The weekend of July 17th, I traveled to New York City (NYC) for the Celebration of Life for Emily Garnett and a memorial at a tree in Central Park selected by the Memorial Sloan Kettering (MSK) Metastatic Support Group for many women they had lost, including Emily.

It was a weekend of many tears — I cried more in those two days than I’d cried in months. There is the con of community, that the loss of so many broke my heart over and over, especially those who I knew personally. We meet, connect, grow close, and then watch in horror from afar as MBC decimates the people we knew. The process may be slow or quick, but it is inexorable and it is horrifying.

And yet, the majority of what I took away from the weekend wasn’t the sadness or grief from the loss of so many wonderful, vibrant women, it was the deeply important value of community.

The time I spent with the ladies I’d only previously “met” online in person was incredibly meaningful and helpful. We talked about life and love and a little about treatments or MBC, but mostly stuff outside of MBC. We drove around, we got super lost in Central Park and walked more than two (2) miles, we searched for a bathroom (eventually successfully) and people watched to our hearts content.

It’s not that my family or the healthy people I spend time with have entirely no idea what living with MBC is like, it’s just that there is a nearly immediate connection between those of us who are living with MBC that can’t be replicated. I knew this before this trip, it was just after COVID and watching so many in our community struggle and die alone, that these connections became even more significant; and yet, the experience of it was even deeper, even more meaningful. There are women, like Emily Garnett, who I was able to meet in person in 2019, but she was too sick for me to see her again and then COVID meant that we couldn’t get together to celebrate her life until 2021, over a year after her death. This separation has affected so many in very deep and ongoing ways; at the same time, those of us who have a shorter life expectancy, for us, the separation means we likely won’t get to see these special friends ever again in this life.

It breaks my heart to see how often the community doesn’t support one another in the way that I have become accustomed. There’s a con — when you HAVE to join a community because of a diagnosis that cuts you off from family and friend and then you aren’t accepted by this community you’ve been drafted into, it’s insult heaped upon injury. I wish there was more openness and acceptance. During our brunch, pictured above, we joked that we’d create a pin to wear at SABCS that would have a wheel around the outside, to stand for not re-creating the wheel, and would say “no stupid shit” on the inside. There truly is too much “stupid shit” going on in the world right now.

Those of us who have to contend with ongoing/forever/chronic illness/side effucks and constant medical treatment and so much that strips us of our dignity and individuality …. well, sometimes that feels like all our life is.

BUT

It’s not. We are all still human beings outside of our trauma and suffering. Those of us who know this experience and how important it is to LIVE, we connect differently. We connect deeply and we connect in a way that is meaningful forever.