This instrument can teach, it can illuminate; yes, and it can even inspire. But it can do so only to the extent that humans are determined to use it to those ends. Otherwise it is merely wires and lights in a box. There is a great and perhaps decisive battle to be fought against ignorance, intolerance and indifference. This weapon of television could be useful.
… said Edward R. Murrow in his keynote address to the 1958 Radio-Television News Directors Association convention. Were he still alive, I imagine he could say the same of Twitter in 2013, an instrument that has become a source of truth and power for me. It is my favorite social media networking platform and the subject of today’s Health Activist Writers Monthly Challenge.
Twitter appeals to me with its speed and instant access to the information I need. Offering it up in bite-size pieces or, if I am starving for more, delivering links to charts, and graphs, studies and reports; to reliable sources or even pulp and punditry, if I’m so inclined. Some times, it reminds me of evenings spent far away and long ago, by the transistor radio, as in Van Morrison’s Days Before Rock and Roll, turning the knobs and tuning in to places, like Athlone and then farther away to Radio Luxembourg.
In the winter of 2011, I was a neophyte to cancer country and social media, the language and politics of both forcing me to resume the ways of a full-time, often recalcitrant, student with a full-time job. Until one Monday evening last March, I was feeling rather smug. Having done my homework, I could talk knowledgeably about breast density and mammograms, estrogen and progesterone receptors, and the difference between DCIS and IDC. I had learned how to decipher a surgical pathology report, but I had not been thorough enough. As I peeled away the layers of awareness, I began to feel betrayed, deliberately duped by a media often saturated with stories of breast cancer like mine, of ribbons and races, of celebrities who triumphantly “overcome.”
A chilling reality emerged from a virtual conversation with a group that meets online every Monday, 9pm ET at#BCSM, The Breast Cancer and Social Media Tweetchat. Here, at “the intersection of breast cancer and all things social media,” I learned about metastatic breast cancer and METAvivor, a volunteer-run non-profit which has coalesced around three sad truths
- support for mets patients is lacking
- awareness about the disease is strikingly low
- research devoted to mets is woefully underfunded.
A stranger in a strange land by any measure, I was unprepared for such a level of familiarity, an instant and easy intimacy in the virtual company of The Breast Cancer and Social Media Twitter chat, where truth is conveyed at lightning speed in 140 characters or less. That particular Monday, the group was “speaking” with @CJMeta fromMetavivor, Dian “CJ” M. Coreliussen-James who introduced herself thus: “Founded an MBC support prog 07. Grew FAST! Knew we could do more as non-profit. And 4 of us founded METAvivor in Jan 09.” Such an unfamiliar urgency to those words. And then the sentence that leaped from the screen and into my heart:
One of the things we talked about today was this reality: of four founders only two are still living.
Re-tweeted again and again, the message was clear. Metastatic breast cancer is the kind of breast cancer we all fear most, the kind that spreads to distant places on our bodies, usually the bones, the liver, or the brain. Sitting at my computer, unsure how to contribute, it dawned on me that the lump in my breast was not the thing that could kill me; a lump can be survived. But the breast cancer that metastasizes. That breast cancer that spreads to distant organs? It is not considered survivable. METAvivor is committed to helping change what continues to be this tragic inevitability, and Twitter can be a useful weapon. I think Edward Murrow might agree.