26 September 2013

Out of Place, In Our Element at Medicine X

I don't remember the flight to San Francisco the first year I went to Stanford for Medicine 2.0 conference. I don't remember the car we rented. I do however remember the drive to Palo Alto, highway lanes crowded with 5 p.m. traffic moving purposefully like so many industrious bees, in and out of lanes, swiftly circumnavigating the bay, heading south, south, into the city suburbs.

As we turned east toward Palo Alto, the commuters' sense of urgency gave way to tree-lined streets and bungalows with practical but well-landscaped yards. I'd first read about the digital Mecca in WIRED magazine in the late 90s, and then, as one of Douglas Coupland's wanna be Microserfs and an intellectually-endowed teen living in a rural Southern community, had daydreamed about as a place where the local chamber of commerce must have erected signs saying, "Welcome to Palo Alto! Nerds are safe here."

I'd imagined more habitrails and Legos, more glass and steel. And grass... I'd imagined grass. But in the autumn light of late September, the California landscape appeared a golden brown of scrub brush, cedar, and palms. Stanford's cardinal red banner stretched across the main entryway to campus, and I, aged 31 with an undergrad degree in journalism from Chapel Hill and a master's nearly complete, thought one thing only — I don't belong here.

My attendance at Medicine 2.0 was made possible only by scholarship, my application a result of happenchance and blind ambition. Late to the social media party, I had only recently signed on to Twitter, my moniker, AfternoonNapper, coming as an extension of my blog's title: The Afternoon Nap Society. Despite its name, TANS was less about napping and more about the reasons I was compelled to nap — surviving triple bypass surgery, a stroke, bypass failure, the loss of my left kidney, four brain aneurysms, and a gastric rupture. On Twitter, I was able to indulge my need for knowledge by following the nation's top medical institutions. Stanford was one of them.

When the call for scholarship applicants came through, I tweeted back to conference organizer, Dr. Larry Chu, that I wished I could come but the travel would prove a financial hardship. Since having a stroke, I had been fortunate not to lose my job, but my absence partnered with general economic downturns led to my position being restructured within the company such that I became only a part-time employee. Dr. Chu responded to my tweet simply yet enthusiastically, "You should apply!"

Should is a word with many implications. It is advice; it is a mandate; it is a theory. However, it does not suggest the outcome of what will happen when whatever should happen actually does. Once in Palo Alto, I sequestered myself. I knew no one, and thus was on guard lest anyone try to get to know me. The first morning of the conference, I stubbornly refused to ride the conference shuttle from the hotel to the Li Ka Shing Learning and Knowledge Center next to the Stanford Medical School. Instead, I took a bus. I arrived in time for breakfast, which I ate alone standing in the cool sunshine on the Li Ka Shing center's balcony while all the other conference attendees mingled and met. They were fit and tan, California cool, carrying iPads and iPhones and iPods, and I did not belong there.

But Dr. Abraham Verghese was a keynote speaker. I'd brought my copy of his narrative medicine novel "Cutting for Stone" along with me in the hopes that I would have the opportunity to get his autograph. It was a surprise to make my way into the plenary hall and find that the ePatient scholarship recipients not only were seated together but seated in front — in the very front — of the room, and gift bags had been placed on each chair. Inside was an autographed copy of "Cutting for Stone." Senior Associate Chair for the Theory and Practice of Medicine at Stanford, Dr. Verghese spoke of the ritual of the patient exam. As he described his slow and gentle movements from the pulse point on a patient's wrist to the tender fold inside the elbow, I felt a warm wave of recognition and took no more than a moment to realize why. The subtle techniques Dr. Verghese described were the same that my vascular surgeon, one of the top in the nation, had used upon my initial visit six years prior. My heart could not have been more full of admiration, so much so that as others applauded the close of Dr. Verghese's speech, I seized my personal copy of "Cutting for Stone" and made a beeline for the far side of the stage. Dr. Chu and Dr. Verghese stood together talking as the audience dispersed for a coffee break, and I stood three feet in front of the two doctors, clutching the novel with both hands at waist level, smiling, and vibrating with nerves, which was when Dr. Chu introduced me to Dr. Verghese by name. I didn't know Dr. Chu even knew my name. He had no reason to know my name — first and last, said with a welcoming arm extended. I hope that I presented myself with a certain sense of decorum; however, I fear that instead I gushed. After I thanked Dr. Verghese for signing — and personalizing — my book, I all but skipped back to my seat.

I bore similar enthusiasm for Associate Director of Digital Strategy for the Pew Internet & American Life Project, Susannah Fox. The work she presented included a specific focus on the role that social media played in connecting members of the rare disease community. After 31 years without a name for my collective ailments, I had just that August received the diagnosis of intimal fibromuscular dysplasia, a rare version of a rare disease. I'd met my first other FMD patient on the Mayo Clinic's social network, so Fox's research was electrifying — not only was I not alone, I was on to something in my quest to connect with other patients online. Again lacking any proper sense of restraint, I headed straight for Fox after her speech, failed to introduce myself, and immediately began talking. I like to play with placing emphasis on the different words in the short question Fox must surely have been thinking to herself. Some versions are more flattering than others.

"WHO is this woman?"
"Who IS this woman?"
"Who is THIS woman?"
"Who is this WOMAN?"

Fox, who seemed a good foot taller than I, reached down to examine the badge bearing my name and Twitter handle that hung from around my neck, suddenly took a step back, opened her eyes wide, and cocked her head, her long Honey Nut Cheerio-colored hair falling over her left shoulder.

"YOU'RE AfternoonNapper!" she said.

I blinked — a lot.

"Um, yeah," I replied, eloquent as ever.

"Oh my gosh; I've been reading all your tweets," Fox said.

I remember absolutely nothing of what happened next. Susannah Fox, former online editor of U.S. News and World Report, current Pew Internet researcher, was excited to meet ME.

These interactions were formative experiences, ones to which I directly attribute my development as an advocate. I had been an ePatient for years without knowing it — I don't remember not being empowered, engaged, and online researching my own health. However, it had never occurred to me that anything about what I did was somehow special, my viewpoints unique, my knowledge valuable. I was, and always had been, just me. The advocate in me apparently needed a little encouragement, and while I always do, I am fortunate to find myself in the position of now being able to be one of the ones doing the encouraging.

As my flight prepares for landing in San Francisco, I am eager to meet the new class of ePatient scholars at Medicine X — a conference of Dr. Chu's own creation, "an academic conference designed for everyone," that is now in its second year. I am fortunate to be a part of the MedX ePatient Advisory Board, which helps oversee the scholarship program that enables patients like me to attend. What patients stand to gain from participating in conferences like MedX is perhaps exactly what keeps more in the industry from including them — their voice, their confidence, their empowerment to push for patient-centered and patient-designed changes in healthcare. We belong here.

Learn more about and apply for MedicineX's 2014 ePatient Scholarship Program at http://stanford.io/1eAwQOD.

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