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?”
Yet talking about SCAD 24/7 isn’t for everyone. Some opt for weekly or as needed interaction on the Inspire/WomenHeart Support Community. Many choose to hang in the wings until a news article or scientific piece is posted. Others migrate to a closed survivors group on Facebook or stay up-to-date through the SCAD at Mayo Clinic Facebook page.
YouTube came late to the SCAD experience once our nonprofit, www.SCADResearch.org, was launched and we created our own YouTube channel to share patient stories. But making and posting videos isn’t the easiest thing in the world, and not interactive, so Youtube falls short. The most recent vehicle in the SCAD conversation is the Google Hangout.
But regardless of platform, the draw of face-to-face interaction is an omnipresent wish. A common refrain over the years remains: “This group is great, but I’d love to get together with another SCAD survivor…” Because for each of us, underlying our experience is the need to look into another’s eyes and see that she too was dismissed by a medical team who felt “rare” meant “not my job.” Or, if she was lucky, diagnosis came quickly but the empathy of family and friends never materialized because, truly, who can understand a heart attack with no rational, documented cause?
Taken in all, we are still an imperfect system because to this day, patients who have been searching for years are just now finding www.SCADResearch.org and self-selecting into support or observation. Many of these survivors have no idea that research is underway or support even exists. In the virtual world, SCAD actually is Bill Murray’s “Groundhog Day,” requiring explanation to each new patient we meet. It’s almost as though they’ve been in a time capsule and reintroduce to society after decades.
And this is why our in-person gatherings are so important. They give everyone an out. Our families are off the hook for a day or weekend, given a reprieve from the “whys?” and “what ifs?” In the place of their support, we SCAD survivors lift each other up. Our bond is strong and we celebrate it! Whether at an airport over coffee or a gathering of six at a regional Dave & Buster’s, the therapy is the same. At the annual SCAD Research Walk/Reunion, we benefit from the energy and wisdom of team Mayo. These researchers and staff are astounding in their commitment to us. There are no words to describe the depth of appreciation one feels seeing the genius behind your personal quest for answers power-walk a 5K and then deliver a research update to your survivor group over boxed lunch. It’s a spirituality that transcends.
But back on earth, practical considerations remain: more survivors to find and support; astronomical amounts of money to raise; research to champion; awareness to expand; and health care providers and families to educate. Although the Internet may give us the ties that bind, it is the eye of the beholder that embraces reality and empowers us to forge ahead.
The eyes are the window to the soul. And, I would submit, the soul can kick butt – with a little help from technology.
Katherine Leon is a survivor of heart attack from SCAD, a WomenHeart Champion, and SCAD Research Board member. She is a 2011 Women’s Day Magazine Red Dress Award recipient, in recognition of her advocacy for people affected by SCAD. As a patient advocate and speaker, she will be presenting the story of patient-initiated research with Brian Loew, CEO of Inspire, at the #140conf June 18-19, 2013, http://nyc2013.stateofnow.com.