The two columns by Bill and Emma Keller about Lisa Bonchek Adams unleashed fury this week from supporters who questioned the manner in which Adams, who has metastatic breast cancer, “lives her disease” through her blog and Twitter feed.
Amid reams of articles, blogs, tweets and Facebook posts, patient advocate and breast cancer survivor posted Liza Bernstein grabbed our attention for posting a brilliant yet simple observation. Responding to an article in Gigaom, Bernstein noted that Bill Keller wrote this of Adams:
“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out…”
And Keller went on to describe what those experts thought.
Bernstein and other e-patients know well that Lisa Adams is an expert.In her response, Bernstein said that while Adams “is not a doctor or a researcher, [she] is a highly engaged, empowered, and educated patient who, as far as I know, has never shared her story lightly.”
Perhaps unintentionally, Keller’s supposition that Adams is a “comfort” to other patients compared with the analysis he provides from “cancer experts” marginalizes what people like Adams bring to others affected by cancer.
The simple explanation is a proverb that has been stated in similar ways in various cultures for more than 2,000 years: “The eyes are the window to the soul.”
Not, mind you, “Windows® is the eye to the soul.”
Trust me, I appreciate computer technology and am ever-grateful for the benefits it has yielded me personally and to the patient group I represent, Spontaneous Coronary Artery Dissection (SCAD). Without a computer, search engine, and online community, I never would have met another SCAD survivor, and Mayo Clinic definitely would not be in the weeds of a virtual registry of SCAD survivors, plus a DNA biobank of patients and families from around the globe, at this very moment.
I grew up in locales where catching crabs with a chicken neck on a string and casting a net for shrimp were common practices, and in each, patience is the operative word. If you look at the case of patient-initiated research into SCAD (or any other rarely diagnosed condition), you see a progression that requires patience. The process begins vast – much like seining – and ends personal. For me, what began on AOL.com as my Internet search for any and all references to “heart dissection,” was turbocharged by Google and its evolution. (I remember worrying about what would happen to my computer if I tried this “thing” everyone was talking about. It seemed daring enough to be on AOL instead of mindspring!) But Google led me to an organization, WomenHeart: The National Coalition for Women with Heart Disease, and the online community it runs in partnership with Inspire, the Inspire/WomenHeart Support Community.
And there, on www.inspire.com/groups/womenheart is where our little incubator of SCAD patients formed. Very slowly at first, but thanks to Google’s search and display features, the pace picked up over time and we grew into the hundreds. Then, Facebook was launched, providing a seemingly more personalized venue to interact. Next Twitter, which (although ultra concise at 140 characters per tweet) is an easy way to connect with likeminded souls, similar to that instant bond when walking down the street and sharing “Great game, huh?”