10 June 2013

Dr. Mike Sevilla Has Left The Virtual Building

Hearing of Dr. Mike Sevilla's decision to leave the realm of healthcare and social media was like stumbling across the obituary notice of a mentor's passing.

Sevilla was one of the first physicians I met online to take notice of my own work, and he joined Dr. Michael Ulrich of Mayo Clinic to be the first physicians to participate in a live Facebook dialogue with the patient-run, peer-to-peer support group for those affected by fibromuscular dysplasia, FMD Chat, on Nov. 12, 2011.

But by 2011, healthcare social media was an old hat for Sevilla. In 2006, he was one of the first physicians to engage in social media, blogging as Dr. Anonymous at a time when most of us were still experimenting with ICQ messaging, Napster, and MySpace. Colleagues appreciated his voice as he blogged about what interested him and what he felt was important, and thus he garnered a following and a community. Affectionally referred to as "Blog-A-Holics Anonymous," the community supported one another.

"All of us would write a blog post, and we would post it up somewhere on a friends blog, and we would all go there and gather and leave comments and get to know each other," Sevilla said in his farewell address. "That was the old days back then."

He and his fellow pioneers of healthcare and social media operated without a guidebook. They found their own way and sometimes made mistakes, but the goal was to have a dialogue and to learn from one another. Now, Sevilla said, the community has become polarized, pointing fingers to say what "should" be done, which has lead to his growing sense of frustration.

"Where is the community out there? It's like 'you're on my team or you're not, you're with me or against me'," Sevilla said.

Indeed, as social media gained traction in the general population and within healthcare, the market became more crowded as users flocked to platforms such as Yahoo groups, Facebook, Blogger, and Twitter.

"The best and worst thing happened in healthcare and social media—more people started using it," he said.

As the voices grew more numerous, the vitriol grew more prolific.

"One of the things that I've observed in the recent past, especially out there on Twitter—I know it's been happening, you know, forever—I've seen out there more that people are just yelling," Sevilla said.

Sevilla hits on a cultural shift that has far greater implications than simply within social media. Media consumers overall have been fed and themselves fed the rise of the talking heads as civil discourse has been traded for histrionics and insults. Though I blame the advent of shock jocks and tabloid talk shows for pushing the boundaries of free speech toward our decline in civility—Howard Stern and Jerry Springer, anyone?—the increase in channels of dialogue and speed with which information is disseminated certainly made it easier to reach out and be a jerk to somebody. Communally we asserted our right to freedom of expression at the cost of the Golden Rule—do unto others as one would have them do unto you.

Thus, it should not be no surprise that I learned of Sevilla's decision to leave social media behind on Twitter from three physicians I follow who were discussing Sevilla's announcement, made via his podcast two days prior. Two of the physicians—a gastroenterologist from Texas and a family medicine resident from Washington—lamented Sevilla's departure while acknowledging his reasons for doing so, though the third, an ear, nose and throat doctor from Oregon, took issue with Sevilla's having made his decision so public. However, a public announcement is only fitting for someone who made so much of his life public and thus was left feeling overly vulnerable.

"Being this exposed and this transparent—people know who are out there—it really kind of wears you out," Sevilla said.

Sevilla is right. The public eye exists for scrutiny. We've love a good scandal and will make much ado about nothing if necessary. Even those with nothing to hide grow weary of continually making sure they've nothing to hide, or the emotional turmoil of laying oneself out on the line simply becomes no longer worth the reward. As Sevilla unplugs and walks away, so too does another social media public figure, Secret Agent L, whose notoriety exploded after a local news interview gave way to a 2010 CNN feature that exponentially increased the Secret Agent's followers and missions of kindness but ultimately tapped out a giving heart. Similarly, The Bloggess wrote a book that catapulted her to the top of the New York Times' best seller list and yet she still struggles with depression and anxiety and chooses to live in rural Texas. Then there's Allie Brosh whose blogging rose to fame in stride with her depression, and well, the list goes on. Meanwhile, I'm trying to balance being AfternoonNapper with being a rare disease community leader with being a magazine editor with being just plain old regular me, and plain old regular me has to be occasionally chewed out by her best friend and her husband to "put. the. smartphone. down." and pay attention to the flesh-and-blood human beings directly in front of her, or hell, just go out and garden rather than read another damn status update.

So when Sevilla said, "I've always told myself that if it stopped being fun, that then I would stop, and it's been harder and harder to find fun in social media for a while, and it's really felt like it's been a job," I understood exactly what he meant. To distinguish oneself requires hours of hard work and continual effort—building skill sets, networking, keeping up with current trends, and juggling personalities (one's own and those in one's communities). And as our social media capacity builds, the burden on the social media generators increases.

"To be considered cutting edge these days you have to do things like have a book deal, or do a TED talk, or have a smartphone app," Sevilla said. "I don't have any of those. I don't have a desire to have any of those, and I don't have the time, the mental strength, or the will to do any of those."

Admittedly, I want the book deal, but I wanted that long before I ever started being social about my media. The rest? Well, to achieve it would take a lot of work, and frankly, my own time to step out of the social media spotlight may come long before there's an app or a $10,000 TED ticket with my name on it. However, I continue to be willing to give myself to this job I appointed myself to do because I continue to believe that it's important. Sevilla said that when he began using social media he gained a following because he was a novelty—a physician using social media—but that that space has become a crowded one. Again, he's right; however, just because there are more physicians using social media doesn't mean that there are better physicians using social media or that all physicians are using social media. My own physicians are not using social media. I'm dragging them along kicking and screaming, showing my GP how my smartphone allows me to input and graph my blood pressure readings, and giving my rheumatologist my log in information for 23andme so he can click through my personal genome results. And still I caution every well-educated, urban techie who flippantly touts smartphone and high-tech solutions to healthcare problems that access is still a very real issue in the rural market, compounded by health literacy limitations that know no geographic or socioeconomic bounds.

From my patient-perspective, Sevilla leaving healthcare social media behind doesn't clear space for new users, it creates a void in our leadership. Too many physicians buck the social media trend while complaining about what patients are consuming online—Sevilla created content, the ultimate panacea for an ill-informed consumer. It is my hope that each and every social media user evaluate his or her own voice's volume and tone, then focus on the goal of fostering a dialogue that grows the next generation of social media users to be better than we are, to be more civil, to be more informed, to be more giving, and, above all else, to keep being social from becoming more important than human beings.

09 June 2013

Charydbis Paints, A Story About Regina Holliday

Her passion is a maelstrom, pulling the masses into her swirling sea of brushes and paint, Legos and cinderblocks, yet as does Charydbis, Greek's mythological representation of the tides, all who are drawn in by this great passion are returned—churned over, tumbled round, and changed.

Her intensity frightened me at first. There are few in this world who live with such a sense of purpose and clear sense of leadership, and too often those who do separate themselves from the sense humanity that drove them to their cause. What endeared Regina Holliday to me consequently was the way her voice strained and rose an octave as she told the story of her late-husband's diagnosis with kidney cancer. It was a voice rife with emotion yet sharpened on anger and urgency. It was a voice that had experienced loss as the result of wicked biology and hurt as the result of medical arrogance and incompetency. It was a voice I recognized.

Holliday fed her experiences into her art, becoming an advocate whose paintings remind me of Van Gogh—at once fervent, piercing, melancholy, and emboldened. It's a likening about which I have commented to her before and which she drew upon when painting my story upon the back of a suit jacket for The Walking Gallery, an advocacy movement she leads as a way to bring personal stories back into healthcare. Of the more than 250 jackets now in the Gallery around the world, my jacket is number 126.

In addition to her walking works, Holliday paints on site, turning conference presentations and panel discussions into lasting metaphors. She packs a suitcase full of acrylic paints, canvases, a small palette, easel, and painter's apron, and busily translates words into images, stopping occasionally to chat with the curious onlooker unfamiliar with her work, hug a Walking Gallery member, or give yet another writer yet another interview. She's constantly on the go such that just reading her schedule makes me tired, yet she is as relentlessly as dedicated as a mother to her two young sons who already display her keen sense of wit and wisdom.

Holliday and I were at the MedCity News ENGAGE conference in Washington, D.C. when she asked if I would be her easel while she took the stage to present her latest piece, completed on site during the day-and-a-half conference. She said it was easier to explain a painting when someone else was holding it. I took the invitation at face value, honored to have the opportunity to share even the fringe of a spotlight with her. I held the painting by its wooden slat across the middle of the back. "It's very shield-like," I said.

We climbed the three small stairs to the stage and stood in a line—me, the painting, and Holliday at the podium. Her words came quickly. Neither of us were supposed to be there, she said—I having first criticized MedCity News for having no patients on the list of speakers at its first ever patient engagement conference and she having been told that she was not allowed to paint on site. However, both of us were there because our mettle met with equal moxie, as MedCity News Editor-In-Chief Veronica Combs cleared the way, enlisting me as a panelist as Holliday as painter.

Standing so close to something so fierce, I clung to my painted shield, captivated by her face. She grasped the podium's edge with her right hand, leaning toward the microphone, as her left hand curled into a loose fist, thumb turned up and just slightly separated from the rest of her fingers. And ever so slightly, that hand trembled. As she described the painting's imagery, a tornadic funnel of change with the color of a bruise, tears welled in her eyes, and as she dedicated the painting to Combs, who during a panel discussion disclosed her own miscarriage six years prior, one slick, shiny drop crested her cheek and ran down to her chin.

Past the glare of the spotlight, I saw Combs walking up the center aisle. She was crying. She and Holliday embraced. "Thank you," she said. And then she took me too into her arms. "We'll have more patients here next year I promise," she said.

Such is the way things are changed, turned around, tumbled over, and through the havoc of the heart, disrupted.