16 April 2015

Owning Up — Or — I Know How Nicholas Sparks Feels

Speeches, soundbites, video clips, indelible images — memories mapped to become mementos in and of themselves. What if we don’t want to remember? What if we need no reminder to be unable to forget?

Two and a half years ago, I stood on a public stage and put my marriage on a pedestal, a shining example of how patients and caregivers should be together. Every word was true. For all intents and purposes and for what it was worth, our relationship was far from the worst, which makes it harder to pinpoint exactly how, when and why it failed.

Neither points fingers or at least we know the adage — “point one finger at me and three more point back at you.” We did pretty damn well. We could have done things better. We made assumptions. We didn’t allow for change. And now we no longer live together.

It’s been five months since the separation, and it will be another seven months before a judge will grant a divorce. (The South likes to make such things more difficult than they already are.) We’ve agreed to do together as much of our coming apart as we can, which has confounded loan agents and real estate attorneys, but neither of us knows how to go through something hard without the other one. It is… complicated.

I am mad at him. I am mad for him.
My husband and I are divorcing. My friend is losing his wife. 
The only redemption comes in that two friends do not have to lose one another. 

At least not yet.
At least not yet.

Because he knows me. And I know him. 
Because we have learned so much from all we have gone through together as husband and wife, caregiver and patient. 
Because the very things that made us strong as individuals — independence, persistence, doggedness — were detrimental to us as a couple. 
Because we did the best we could. 
Because we deserve a happy ending. 

Which we don’t know what looks like yet.

He’s been painting what was once our bedroom — rose and warm gold covered over with dark mustard and "greige." He says it’s beachy. I say it’s nautical. We know we both drifted away.

24 December 2014

Hurt Society: Planes, Trains & Automobiles — ePatient Travel Edition

My relationship with planes has changed over the years. I remember being little enough to curl up like a cat in my single seat and eventually having to stretch out to put my head in my mother's lap.

Trains have been much more of a novelty. As industry routes and freight trains once loaded with logs and coal have given way to cute touristy things and railway beds reclaimed as greenways, we have lost much of our connection to this great American mechanization.

As an only child, I always had the backseat to myself whenever we took family road trips, which may well be what lead to my penchant for naps, as a set of headphones and a pillow did much to block out the crackling AM sports radio to which my father always listened.

Regardless of the method, it's always held that so long as I have a window and music, I can travel for hours.

When I began flying on a regular basis for my advocacy work, I made one other small investment — ear plugs. I had no idea the difference they would make. Like my headphones, the ear plugs served to block things out. Crying babies, loud talkers, engine noise, and ill-timed pilot announcements ceased to exist. Suddenly I was so much less exhausted after my cross-country flights. Many of my days are spent working in near total silence, save for the cats thundering past, having received random signals from the feline planet and a collection of clock ticks and chimes. An airplane's constant droning roar was too much. It wore me down. It wore me out.

The downside to ear plugs is that others generally can not tell when one is wearing them, so an earnest attempt at conversation can lead to being misconstrued as rude. Note — it's not that I'm not paying attention to you; it's that I very purposefully have chosen not to hear you.

Given the holidays, many patients (and others) have travel slated. Seeing family and friends may have great sentimental appeal, but its reality is much more complex. If one has gotten a job, lost a job, gained weight, lost weight, dumped a lover or found one, bought a house or sold one, had surgery or opted out of one, started a new medication or stopped an old one; or any other combination that basically translates to living, my own advice about going to see those aforementioned friends and family involves deep breathing, happy place visualization, lots of tongue biting, and comfortable shoes to enable nice long walks. As the great Mick Jagger once said, we can't always get what we want, but we may well get what we need — a new perspective.

With that in mind come the following posts:

What can each of us do to help when we see someone who is having a tough time, even if they don’t look sick?
Susannah Fox

Make life easier for yourself when you travel by accepting help that is available, strategizing before you leave, asking for reasonable accommodations for problems that arise, and trying to keep the weight of your luggage down. Also contains a few specific ideas to make travel less trouble.

The Transportation Security Administration can be friendly, provided one is willing to jump through certain hoops. 
Matthew Charron

All disabilities are not visible — but one mom to a rare disease patient explains that discrimination against invisible disabilities can be entirely less than subtle.
Melissa Hogan

Plan ahead to avoid common travel problems such as sleepiness and stiffness.
Mayo Clinic

Speaking of sleepiness and stiffness... here are some tips about sleeping in an airport.
Outside Online

And when it comes to flying, take this quiz to evaluate your savviness.
Outside Online

18 November 2014

Hurt Society Blog Carnival Call: ePatient Travel Edition

Fellow advocate HurtBlogger and I have been traveling a lot lately — cross country flights, multiple hotel room nights, long drives, public transportation, business and pleasure. All the travel takes its toll. We aren't always as rested as we should be, perhaps have always eaten the best, have logged too many steps, or carried too many things. But our advocacy work is important enough that we are willing to make certain sacrifices in order to represent.

This week she and I have met in San Francisco for a rare day of rest and relaxation prior to a Medicine X planning session. Although she lives in Southern California and I in Western North Carolina, our meeting comes on the heels of trip to Boston and Philly — her for the American College of Rheumatology and me for the American Society of Nephrology. Catching up this morning over breakfast, we discussed our travels. We didn't focus on sights we'd seen or foods we'd eaten. Frankly those kinds of things are rather low on the list compared to networking and learning.

Instead we lamented the physical demands of traveling and dealing with an industry — though often called "hospitality" — that is less than patient-friendly. I've heard more stories in the past two years about patients with invisible disabilities being disbelieved and harassed while seeking needed accommodations such as extra time to board a flight, a room with a refrigerator for medication and nutrition or assistance carrying luggage. Many such things can be had by paying more money, but as patients know — problems most easily solved by throwing money at them are the ones that present some of our greatest challenges.

How might we better address these challenges? As individual advocates, we and many others have voiced our concerns and pointed out problems — but that doesn't mean that we've been successful in making it easier for others. So we're launching an offensive. In preparation for the holidays' busy travel period, HurtBlogger and I are joining forces to bring you the Hurt Society Blog Carnival ePatient Travel Edition that will pull together posts highlighting what it's like to travel as a patient.

We want to hear from you. This isn't just about venting — it's about calling out bad policies and proposing solutions; it's about recognizing those who are getting it right and holding them up as shining examples; it's about sharing tips to help others survive whether that's enrolling in TSA's Pre-Check program or finding hotels with free breakfasts.

Submit your post to us for review and possible inclusion by noon (Pacific) on Saturday, Nov. 21. Be sure to format your submission with the following:

Post Title:
Blog Title:
Twitter Handle:
1-3 Sentence Post Summary: 

Note: perhaps you are not interested in writing a post of your own but know of one that has provided you with valuable tips. Send it to us!

Look for the Hurt Society Blog Carnival ePatient Travel Edition to post this holiday season. 

19 September 2014

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.