What Makes A Community? -by Jackie Fox
I’ve been thinking about what it means to be part of a community. Whether your community is your hometown, your workplace or your church, the essence of community is people who are there for each other.
I think a big reason #BCSM has caught fire on Twitter and gained national attention from USA Today and Forbes is because it’s so much more than a tweetchat; it truly is a community. Moderators and cancer survivors Jody Schoger (@jodyms) and Alicia Staley (@stales) have a way of making you feel like you’re having a chat over coffee. Deanna Attai, MD (@DrAttai) is a constant, calming presence and the breast surgeon everyone wishes they had.
#BCSM has become more than a place to hang out for an hour on Monday nights. The #BCSM hashtag has become a “bat signal” for those who need reassurance or information 24/7. I was recently contacted by a man with breast cancer who wanted to know if I had any advice for him. Outside of universal lessons learned such as giving yourself time to think, I had nothing to offer. I sent up the bat signal and immediately got retweets and comments from members of the #BCSM community. Before long, Dr. Robert S. Miller (@rsm2800), an oncologist with Johns Hopkins, shared a link to a full article on male breast cancer in the Journal of Clinical Oncology. I emailed it to the man with breast cancer and he said the timing was perfect. He was gathering information for his first meeting with his oncologist.
In another bit of uncanny timing, a friend shared the article Stop Instagramming Your Perfect Life as I was working on this blog post. It’s a great article. The author, Shauna Niequist, says that because we put our best, most successful selves forward on social media, we foster the envy that comes from comparing ourselves to others and never really connect. “Because community—the rich kind, the transforming kind, the valuable and difficult kind—doesn’t happen in partial truths and well-edited photo collections on Instagram,” she wrote. “Community happens when we hear each other’s actual voices, when we enter one another’s actual homes, with actual messes, around actual tables telling stories that ramble on beyond 140 pithy characters.”
And that’s the beauty of the #BCSM community. While we may not be gathered around an actual kitchen table, the voices that come through are very real. No one is out to one-up anyone else. No one is out to sugarcoat the experience. Women and men, patients and doctors, caregivers and friends, share their anger, their fatigue, their frustration, their fear. The husbands who left. The friends who stopped showing up.
It is true that it’s pretty darn difficult to fit what you want to say into 140 characters, but this also illustrates #BCSM’s success. Most people and organizations start out with websites and blogs and get on Twitter later as a way of sharing these venues. #BCSM is the opposite. It started out as a conversation and evolved to Facebook and a website, because there’s so much more to say and share that an hour a week and 140-character bursts aren’t enough.
True communities rejoice and grieve together. Members of the #BCSM community have shared the triumph of NED (No Evidence of Disease) and the ache of losing women much too soon. After the stunning deaths of Rachel Cheetham Moro (@ccchronicles) and Susan Niebur (@whymommy) on the same day, February 6, 2012, the Monday night tweetchat became an online wake. Rachel’s friends in the #BCSM community traveled to her funeral.
Telling stories, offering comfort and advice, sharing the highs and lows, being there for each other, both online and offline. If that’s not a community, I don’t know what is.
Editor’s Note: Thank you Jackie for sharing this powerful story with the BCSM Community! If you’d like to read more of Jackie’s work, please check out her website and follow her on twitter! Thank you Jackie!