During one of my recent chemo infusions I sat next to another woman with breast cancer. We bonded over some common breast-cancer lingo and rolled our eyes when our machines kept beeping, the nurses nowhere to be found. My father sat between us. Also BRCA positive, he is now getting all the necessary testing. He passed my new roommate his turkey sandwich and chimed in: “I just got a breast exam too!”
When I first joined a support group for young survivors (women with breast cancer under 45), one of the leaders said, “We are sorry you are here…but glad that you found us.” This captures my conflicting emotions about being part of this new community. I am grateful to have connected deeply to a network of incredibly strong, compassionate, funny women. Many of them have helped me navigate all the medical decisions and psychological terrain that come with this disease. But last week when I heard that one of the members, a woman with two young children, died, I couldn’t bring myself go back to the online group for a while.
Catapulting into a new community reminds me of a book I read before diagnosis called Far from the Tree by Andrew Solomon. Solomon writes about what he calls “horizontal identities,” those that children do not inherit from their parents. The book centers around parents’ experiences raising children with lives, needs, and circumstances far different from their own. These parents love and accept their children even though they struggle to relate to them. Some examples of horizontal identity include: autism, down syndrome, schizophrenia, and depression. Often these are identities we would not choose for ourselves. However, members find solace and hope in a community that accepts and embraces them.
At the same time I find my place in a new community, I try to figure out how to connect with the ones from my pre-cancer life. On the phone the other day, another young survivor, Sara Fishman Lewis, said it so well and simply, “I walked through the door and others around me have not.” This metaphor has stayed with me. I did inherit the BRCA gene mutation, but a breast cancer diagnosis is what I would call a walk through the door into a new identity world – one that is horizontal in the sense that it is not an “inherited” reality I share with family and friends. As time goes on I feel further away from the person I was, as much as I try to conjure her up in my post on a school play or a race from camp. Sometimes it’s hard to look back at the world on the other side of the door.
Even though my friend last week at chemo was probably twenty years my senior, she was newly diagnosed, so I gave her all the advice about hair loss and the scoop on the cancer center. We laughed like we were little girls having a sleep over. We held our blankets up to our chins. We sat there side by side, getting our life-saving drugs, sharing in the same vulnerable condition. She told me that her mother had died of colon cancer some years back. Now getting her own diagnosis, her first thought was, “I want my mommy.”
Entering into this horizontal identity, for better or worse, connects me more with strangers than with my closest friends and family. To be honest, it scares me to find myself suddenly in this new world—who am I now? I am coming to realize that each blog post is an attempt not only to connect with people in a similar situation to my own, but also to reach back across a threshold to make my new world relatable to others, including, at times, to myself.
And so, I will continue to build connection with my young survivor cohort just as I seek to build a new and different kind of connection with many of you—one post at a time, through stories, through honesty and humor, from my side of the door to yours.