3 August 2017
Alicia Staley and Jody Schoger met on Twitter in 2009. After a series of online interactions, they were inspired to create the #bcsm community. The first #bcsm tweetchat took place on July 4th, 2011.
Alicia and Jody brought together patients, physicians, researchers and others who shared an interest in providing education and support for all impacted by breast cancer. Without Alicia, Jody and the #bcsm community, I would have never met Lori Marx-Rubiner, who died yesterday due to metastatic breast cancer.
Lori and I crossed paths during one of the early #bcsm tweetchats. She was the driving force behind the early LA tweetups, and in 2013 she wrote about one of our get togethers, noting that “it is at once an uneventful and deeply powerful few hours.” Her caption next to our group photo says it all: “How fabulous is this group??”
Shortly after we met online, Lori and I discovered that we lived fairly close to one another. We started meeting every few months for lunch or dinner. She was always very matter of fact and had a great way of breaking down problems or challenging situations. She was a great listener, and had a wicked sense of humor. After her diagnosis of metastatic breast cancer, we continued to meet, and our conversations delved deeper into issues of life, death and our own mortality. After my close friend and colleague was killed in a freeway accident, she was the first person I turned to when I was ready to open up and talk. As an “expert patient”, she volunteered her time to come to my office for a “lunch and learn” with my staff to discuss some common frustrations that patients experience when trying to navigate the healthcare system, so that they could better understand the patient’s point of view. She was an incredible and inspiring woman and I am so thankful that she was in my life.
When Donna Peach died in 2013, I posted some thoughts about how incredible it was that something like Twitter could bring people together in such a meaningful way. The connections that we make online translate into something very special when we meet “in real life”, or IRL. The virtual “group hugs” are wonderful, but the IRL hugs are truly magical. Lori and I shared many of those magical hugs.
Rest in peace, Lori. Rest in peace Jody, Donna, and all of the other women and men taken from this world way too soon. You are remembered with love. Thank you to the Universe for bringing Alicia and Jody together online. And thank you to Alicia and Jody, who had the vision to create such a special place for all of us – the fabulous online community that is #bcsm.
