And In The Wilderness A Clearing Emerged

In addition to my work as an advocate, my actual "job" has been as a reporter and editor. I've been in the field professionally since I was 17 (though one could count running the school yearbook and starting a literary magazine as my initial forays). My first employment outside a horse stable was in an university's public relations office. I worked four summers there moving up from the mail room and putting together basic press releases to writing full articles and contracting for assignment work while at college. I earned a degree in journalism with an outside concentration in political science at UNC-Chapel Hill. While there I worked as a writer, desk editor and managing editor of The Daily Tar Heel; wrote for and edited a literary magazine; volunteered for Journalists United to Maximize Potential, a student-run organization that taught middle school students how to produce a newspaper; interned in public relations for the Morehead Planetarium; and interned in public relations and artist promotions for a record label.

After college I went to work for a twice-weekly paper in South Carolina, which was a formative experience that I was happy to leave nine months later. I got two cats out of it and a love for police scanners. I took a job as a reporter near home in the mountains of North Carolina on Sept. 23, 2003. I rose from reporter to special sections editor for all our contract publications. When our company acquired a nationally-distributed slick-glossy magazine, I became assistant editor and then managing editor in 2010. (And yes there was time spent teaching and being a licensing test proctor in there too...) Since then I've reshaped the magazine, grown its content and overall vision, and — as the years went by and my advocacy work took off, I even had opportunities to involve some of my health contacts in writing pieces for it.

However, my passions changed the more involved I became in advocacy. I saw a greater ability to make a more immediate impact by connecting with patients, providers and industry leaders. Advocacy work made all my personal illness make sense. Illness was a strange gift of burden that gave me unique knowledge and experiences. To communicate about illness was a challenge with deep personal impacts. I was afforded opportunities to grow in this regard and turn my knowledge and experiences into solutions for the healthcare community at large. And I suppose one could say that I fell in love with doing, with getting elbow deep instead of being an objective observer.

Thus I found myself in the position of being all in — with the caveat that I was not yet all out of my job as an editor. For much of 2014, I juggled as many serving plates as for a dinner party of 108. We began planning to revamp the magazine to feature more web content, ad sales experienced an uptick, writers came and went (sometimes not by their choice), and the culture of innovation I loved so much in my advocacy work influenced me to keep editorial offerings fresh. By summer, I was named Coordinator of ePatient Programs for Stanford's Medicine X and learned just how little sleep I really needed as the conference crept closer and collided with press deadlines. I've always worked well under pressure, but this time the pressure also had a way of crystalizing my priorities.

I was supposed to spend the week after MedX connecting with nature. Instead I was gnashing my teeth. Out in the wilds of Yosemite, I only occasionally received a cell signal, which was sufficient for texting at best. Online access could be had only late at night or early in the morning. In the dark hours with my phone held just so, spotty 3G connected me to all those also suffering the #MedXHangover, their blog posts, their continuing conversations. And I felt so very left out and alone.

Then an email arrived from my publisher. We needed to talk about deadlines. Or at least he needed to talk about deadlines. I did not. I needed to deconstruct, discuss and disseminate every detail of my thoughts about patient engagement, clinical trials, online communities, mental health, self disclosure, relationship building, innovation, collaboration — everything that fostered in me the inspiration to continue advocating for change. And thus the decision was made. I replied to my publisher that I no longer was the right person for the job.

We traded emails for two days, and I did not tell my husband — who works for the same company — about any of it. The last night of our trip, we were well into working our way through a water-front bar's microbrew list when he demanded answers.

Him: "Is my kitty okay?"
Me: "What?" 

Him: "Is my kitty okay?"

Me: "Your kidney?"
Him: "Is Nelson alive?"

Me: "WHAT?"

Him: "Is my cat Nelson still alive?"

Me: "Um... yes? What? Why do you think Nelson is not alive?"

Him: "You've been kind of dodgy for a couple of days. Is Nelson dead and you haven't told me?"

Me: (brow furrowed) "What kind of person do you think I am? Geez. YES. Your kitty is FINE. I've just been thinking about making a major career change."

Him: "Oh. Okay."

That night he was happy and supportive. In the morning, when he had sobered up, he was terrified. 

Me: "I knew I shouldn't have told you until I had a plan!"

Him: (consternated) "What IS your plan?"

Me: "Give me a few days."

Him: (incoherent grumbling)

It took another week for things to truly begin to come together. I lined up enough contract work to cover the basics. A side project offered the promise of a business plan. A start-up company scheduled a meeting. And my publisher and I went out to lunch. Four days before my 11-year anniversary with the company, I negotiated my exit strategy. 

I will remain at the magazine's helm for one more edition, assist in hiring a replacement, train said replacement during 2015's first edition and then transition to a contributing editor role. The arrangement frees me to do what I do best and enjoy most — writing, contributing to the creative vision, editing and developing web and social media content — while eliminating managerial duties, thus giving me more time and flexibility to be an advocate and independent consultant. Already I am committed to speaking in Philadelphia and Australia and consulting locally, in Philly, California and Washington, D.C. by April. I also will pursue opportunities for a writer's residency with the intent of working on that book so many have been prodding me to do. 

This pivot, this new plan for the future would not be feasible without years of encouragement and support from friends, family and mentors — though really those categories greatly overlap one another. I thank all of those who have been part of my journey thus far, and I do sincerely hope that they will continue along with me as I hack a new path. Yet I caution — the only following each person must do is to follow the course his or her heart knows to be true. 

Call for ePatient Applications - Medicine X 2015

Each September since 2012, healthcare's thought leaders and innovators have come together at Stanford University for an unique conference event that gives true meaning to the phrase patients included. Medicine X is an academic medical conference for everyone.

Participants from throughout the industry—clinicians, nurses, researchers, device developers, technology creators, pharmaceutical representatives, designers and others—join activated, empowered and engaged patients. Known as ePatients, these patients are at the forefront of changing healthcare to become more patient­ centered.

Stanford Medicine X is the premiere international convening of thought leaders around healthcare innovation, education, design and patient empowerment. Medicine X has begun accepting applications for full and partial scholarships for patients to attend and speak at the 2015 event.

Full and partial scholarships are awarded to as many as 35 patients to enable their conference participation. Scholarships cover or greatly discount conference registration fees, provide all patients with breakfast, lunch and snacks on each conference day, and provide the opportunity for ePatients to become integral voices in conference proceedings. 

Upon acceptance to the Medicine X ePatient Scholarship Program, those selected become Medicine X Delegates. After participating in select events leading up to the 2015 event, attending the conference on the Stanford University campus, and successfully creating deliverables that utilize social media to reflect on their conference experience, attendees become Stanford Medicine X ePatient Scholars. 

To learn more about the 2015 Medicine X ePatient Scholarship Program and apply, click here. Applications are due no later than Nov. 1, 2014. (And yes — if you are interested in and passionate about patients' roles in medicine, YOU should apply. We aren't just looking for people who have helped enact legislation or founded their own nonprofit or invented a life-saving device. Those things are great, but most of all we seek candidates who have a desire to make a difference and can learn from what the program and fellow ePatients have to offer.)

Listen in to what some of 2014's ePatients and attendees had to say about MedX via fellow Medicine X advisor Chris Snider's podcast Just Talking. (And really... this stuff is worth listening to no matter what.)

Post-X Episode 1

Post-X Episode 2