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.

Each woman who has died from MBC has a rock, which was placed in the roots of the tree designated for the support group, a tree which will be their memorial forever.

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.

The group of us who traveled to Emily’s Celebration of life got together for brunch at my hotel prior to going there, from left to right around the horseshoe we created in the restaurant, Victoria Goldberg, Lisa Laudico, Kathleen Friel, Me, Amy Ellen Parliman, Liela Ross and Julia Maues.

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.

Amy and Kathleen were my partners in crime as we walked and got lost and navigated the streets of NY! We may have moved slowly, but we covered LOTS of ground together.
Victoria, on the right, had known nearly every single woman who had been lost and was grieving so much during the memorial. Here we are hugging so hard at the end of one of her eulogies. Bearing the grief of loss is made lighter with the help of others.

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.

9 thoughts on “The Pros and Cons of Community

  1. As the mother of a young woman who unfortunately died of MBC, I can honestly say that during the last year of my daughter’s life, I made so many mistakes. I spent sooo much time wanting my daughter to be here forever that I wasted time realizing that forever wasn’t going to happen. I wanted second opinions, I prayed, I went to every Komen walk, I donated, I took care of two little grandsons who constantly asked me if I was going to die. I did not have time to google all of the things you should not say to a person with stage four cancer!! It was not until after we buried my daughter, that I researched what I should have said. I had five minutes to say goodbye on November 14th,2020, as I was the Gramma who was called upon to take my two little grandsons onto the fifth floor of the hospital to say goodbye to their mommy.
    When I see your pictures of the celebration of life community of your MBC companions, I realize just how many friends my daughter had. I also realized how that hug must have been so comforting and how covid has taken away so many hugs from a mother to her daughter. I thank you, Abigail for these blogs, they make my grief real, but they also make my grief tolerable. Thank you for including me in your community.❤️

    Liked by 5 people

    1. I’m so glad my musings help you — I don’t think any of us are equipped to handle something like this, it’s only that we keep learning and when we know better, we do better. Bethany was so involved with Komen so I know your involvement was meaningful to her. At the end of the day, we can only love. ❤️

      Liked by 1 person

  2. Abigal you are a truly strong person thank you g go or showing us this. It’s so hard and being there for me it’s 100% true people who do not have this will never understand. My sister loves me but acts like this is not happening. I keep praying for more time I am so scared to leave her on her own. God bless you all and I wish you many years .

    Liked by 3 people

    1. Thank you, Renee. I think it’s really hard for people outside of those of us in the community to really fully understand and family has an even harder row to hoe. Keep on helping her to understand, that will be key for her grieving process too.

      Liked by 1 person

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