(My) Patient Leadership in Health Care

They say my grandmother used wait on the stoop of the family’s crackerbox house in Southside Chicago and watch as my father walked to school to see if he would get in a fight before he got to the end of the block. The eldest son of a Polish steel mill worker who dropped out of high school, my father was on the wrestling team and cleaned the inside of tanker trains. But he was smart. He liked science and math, went to college on a scholarship, majored in economics, and went on to Cornell Law School.

As a lawyer, he represented the incarcerated’s rights at the state department of corrections, practiced defense in the state supreme court, and became chief legal counsel at one of the state’s 16 public universities. He helped build houses with Habitat for Humanity, served midnight breakfast to college students during exam week, and tutored his daughter who did not inherit his aptitude for science and math. He taught constitutional law and never once found himself on the wrong side of the law save for a speeding ticket or two. Upon his retirement, he was vice chancellor of technology transfer as well as chief legal counsel and one of the university’s most senior and respected staff members. One could say he did all right.

He did all right by mom and me too. Ever a man of his word, if dad said he was working late, he was. He saved for family vacations by eating a sandwich at his desk for lunch everyday. He kept the official score book at my softball games, sitting on the bleachers in his suit and tie, and bought, arranged, and delivered 40 long-stem roses to my mom on her 40th birthday.

My father’s faults I’ve come to understand more as I’ve grown older — not simply what they are (any teenager will tell you what’s wrong with her parents), but why they exist, how they influenced me, and which ones I too carry. He gets angry when he’s scared and feels out of control. He’s somewhat emotionally awkward and expresses affection by trying to foresee all possible problems, caution against them, and devise a plan to prevent them whether he knows what he’s talking about or not.

I don’t have his temper. Being in situations in which my life has been on the line taught me a lot about what’s really worth getting worked up over. I am more spontaneous, often to his ire.

He became more than his humble hand foretold, and he achieved that goal while always taking the ethical path. For that I admire him greatly. For instilling that same sense of ethics in me, I am thankful. And it is his grit, his drive, his call to service, his belief in doing what is good and right that have become my own.

From age 24 to 31, I underwent triple bypass surgery, suffered a stroke, lost my left kidney, had four brain aneurysms repaired, and survived a gastric rupture before I was diagnosed with a rare variant of a rare disease called intimal fibromuscular dysplasia. Its cause is unknown. There is no treatment. Such things might crush some people. I, on the other hand, persisted.

Throughout my period of survival, I learned so much both practical and personal, and I found a calling in patient advocacy. I became an advocate because I could use my pain for the good of others.

As my leadership role grew, I felt I lost my place as a member of my patient community. It seemed that I could not ask those who looked up to me for the support I needed. My professional distance actually isolated me from what had drawn me into advocacy — my fellow patients. 

The kind of leader I want to be has a heart, and honestly I lost touch with mine. Putting my head over my heart had been critical to my survival — a learned coping mechanism. Similarly, my style of leadership came to be, at least outwardly, impenetrable. I strove to be judicious and fair, analytical and unflinching. I cultivated that well, so well that somewhere along the way I began to lead only with my head, and I sequestered away my heart such that it could not betray me.

It was a fellow patient willing to give me a proper shaking by my emotional shoulders who brought me to the realization that in order to be a good leader, I can not lead only from my head, and that the opposite is not to lead only from my heart. I am pursing training so that I may learn to balance both, re-establishing fellowship to rekindle the passion I know lies within me, and kindling the belief that I can become the leader I’ve never had — the kind I would follow into battle, the kind with whom others hope to work, the kind who teaches others how to be good leaders too. 

Everything Is What You Make It

Lead. Be kind. Help others.

Help one another. Help someone you know. Help someone you don't know. Help someone in a small way. Help someone in a big way. Help a person, help a place, help a thing.

And then celebrate it and share it.

We need some good news. We need to set the tone for 2017. And we have power to control it. We have the power to be better than decent and spread it around. As we do so, we demonstrate to others how we want to be treated.

Perhaps my request is simplistic and hokey. Or perhaps believing it to be so is indicative of the current state of things — that somehow we've come to see being kind as a silly waste of time. There's a culture of "I'm going to get what's mine" that has pervaded our lives. It comes from competition. It comes from struggling to achieve in an environment that champions acquirement more than generosity. We do not need all the things. We are not lesser people because we do not have all the things. And having all the things does not make us better people.

But help — helping and receiving help — has enriched my life in so many ways. It's all that they say about paying it forward and more.

No, we won't turn the world into one great big snuggly ball of love and goodwill overnight. We can start small and make kindness and helping others something that we do day after day after day until it is a habit that comes naturally. I believe that we can do it.

I have to believe that we can do it because I'm so tired of all the bad news. It grows, feeds upon itself, becomes normalized from our Facebook feeds and 24-hour news shows into our daily actions. We don't have have opposable thumbs and free will so that we can be horrible to one another. We are capable of great things. And, like it or not, we are all leaders because someone is always watching and learning from our actions. What kind of lessons do you want to be remembered for teaching?

Now... pass it on.

Running The Boston Marathon — Together

Running for Rare pairs up runners and rare disease community members to raise rare disease awareness and raise funds for the the National Organization for Rare Disorders, Inc. (NORD) and National Institutes of Health (NIH) Undiagnosed Diseases Program. 

As a fibromuscular dysplasia patient, I have been fortunate to be a patient partner for two years now — first with Jessi Colund in 2015 and now with Martha Staples. I am humbled to be a source of inspiration for these women who have put in mile after mile and will be at the starting line for the 120th Boston Marathon bright and early on April 18, 2016.  

I am not a runner. I never have been, and I don't anticipate I ever will be. A physiatrist friend of mine is recommending I start a program of "vigorous walking" for five minutes a day for four to seven days and then doubling that to 10 minutes a day. He wants my heart rate up. I told him that unloading my groceries gets my heart rate up. It's a matter of stubborn chicken and stubborn egg. If I exercised more, perhaps I wouldn't tire so easily, but I tire so easily, so I don't want to exercise more. A.K.A. — it's hard, I don't want to do it, please wave a magic wand. When I invent the magic wand, I'll be sure to let you know. 

Martha and I have been getting to know one another through email, Facebook, and phone calls, and we wanted to share a bit about ourselves and our partnership with those who may also be runners or rare disease patients. 

Name: Martha Stapels

Age: 39

Job: Principal Scientist (Chemist who analyzes proteins)

Years Running: 4 years in grad school, 10 year hiatus, 4 years since, so 8 years total

Years with Running for Rare: 2 years

Longest Run to Date: 28 Miles!!!

Marathons Already Completed: 5 (Portland, OR 2002, Baystate 2014, Boston 2015, Grandma’s 2015, and Marine Corps 2015)

Why Are You Running: To raise money and awareness about rare diseases and to inspire my kids to dare to try hard things.

1) Tell me about a time when you wanted to give up — but didn't — and what it was that drove you onward.

There is always a point in a long run that I want to give up. I try to think about strong runners who inspire me, my kids, my friends, my family, my patient partner, my running coach. Honestly, doing scientific research is very similar to running a marathon. It’s a long slow process and more often than not, things don’t work the first time. Being part of a team helps, and trying to move things forward every day is the only way to make progress. Thinking of who you’re working (or running) for really helps when you want to give up.

2) What is your personal motto?

Courage without fear

3) For what in your life are you most grateful?

I have two beautiful, smart, amazing, healthy, funny kids.

4) What are three songs that make you feel good no matter what?

Indigo Girls, "Closer to Fine"

Missy Elliot, "Get Yur Freak On"

Katrina & the Waves, "Walking on Sunshine"

5) Assume have have unlimited resources and no limitations of any kind (time, money, distance, companionship, family/child care, etc). What would you most like to do?

Travel and run all over the world. Experience all of the beautiful beaches. Take my kids to see amazing waterfalls.

Name: Sarah E. Kucharski

Age: 35

Job: Coordinator of ePatient Programs at Stanford Medicine X; independent consultant

Years Running: 0

Years with Running for Rare: 2 years

Longest Run to Date: I ran the mile back in grade school for the Presidential Fitness Test.

Marathons Already Completed: 0

Why Are You a R4R Patient Partner: The physical and mental fortitude it takes to run just amazes me. I admire runners' drive to carry on past the pain. Such ability is something I hear echoed in the rare disease community, as so many patients have no cure and no treatment but persevere.

1) Tell me about a time when you wanted to give up — but didn't — and what it was that drove you onward.

After I had a stroke at age 27 and was working part-time, I decided to go to grad school. My program required one science course. The course offered at the time was online and about biorhythms. The professor was out for the semester and had left teaching to an assistant. I'm a good student. When I — and a majority of other students — failed the first few assignments, it was clear that something was amiss, but to make matters worse we only received our failing grades after the course's drop date. Even though offered an exception to the drop date, I was in a bind. Another science offering for the program wouldn't be until two semesters away and thus delay my graduation. I used my frustration and anger as a catalyst. I studied, learned how to speak the language the TA wanted, helped other students as much as possible, and learned from others. I resented that the material in and of itself wasn't that hard and that the TA wasn't grading on whether students understood the material — just whether they could regurgitate what they had been told. In the end, I passed the class with an A, and followed up with administration to improve the course and the program overall for future students. 

2) What is your personal motto?

"Many times in your life you may feel that you are failing, but ultimately you will express yourself, and that expression will justify your life." — from Irvine Stone's Lust for Life

3) For what in your life are you most grateful?

I absolutely treasure my parents. They are my advisors, my confidants, my friends. I admire them for their values and the strength and courage they have shown in being MY parents. While being such incredible supporters, they also have allowed themselves to be emotionally vulnerable, which has helped us get to know one another as individuals. 

4) What are three songs that make you feel good no matter what?

Tom Petty & The Heartbreakers, "I Won't Back Down"

Chemical Brothers, "The Test"

London Grammar, "Hey Now" (Arty Remix)

5) Assume have have unlimited resources and no limitations of any kind (time, money, distance, companionship, family/child care, etc). What would you most like to do?

I've been working on a bucket list for several years. I've been fortunate to check off many things on that list, while some have been scratched off for other reasons and new things added. The top three things on that list are 1) pet a tiger 2) get more than a magazine article published — preferably a book 3) write a book. 

Help me recognize Martha's dedication and efforts to make a difference in the rare disease community by making a donation to her fundraising page, available via Crowdrise.com at http://bit.ly/1TbgUbE.

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.

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.

Annette McKinnon

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

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:
Name:
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. 

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. 

Help Shape the Mental Health Conversation at Medicine X

Mental health too seldom is discussed. There remains a stigma associated with with conditions that impact the brain. Why? The brain has no better protection from illness than the heart or the lungs or the skin, yet we hold it to an entirely different standard. This antiquated philosophy must change—and only will change when we bring conversations about mental health to the forefront.

I am an advisor to Medicine X, a healthcare and emerging technology conference held at Stanford University each September. During and after Medicine X 2013, attendees and those engaging in the conference via the livestream and Twitter feed called for greater inclusion of mental health issues—and we listened. At Medicine X 2014, mental health and psychology weave their way in and out of various presentations. Daniel Siegel, MD will give a keynote speech and lead a 90-minute Master Class on "Compassion, Connection and Engagement: How Health Arises from our Mind, Body, and Relationships." Dustin DiTommaso of MadPow will take a look at the psychology of motivation and how to close the gap between people's intentions and their actions. Allison Darcy presents her work to develop and pilot a smartphone app for patients with eating disorders. Four CEO's will talk about building companies to bring emerging technology to mental health; and psychologist Dr. Ann Becker-Schutte leads a panel discussion about mental health as a turning point for whole person health.

It would be remiss of me to talk about bringing mental health into the light without being open about my own. As a freshman in college, I was diagnosed with depression and anxiety. Changes in environment and my support network brought the diagnosis about—I am an only child, and frankly, I always got along better with adults than I did my peers. I went to a relatively large university where 200 to 300 students filled giant lecture halls for introductory classes. My professors didn't know I existed. I became withdrawn and my grades suffered (taking 17 hours of classes didn't help). I did best in the two classes I had registered for without my advisor's approval—junior/senior level classics and political science courses in which I was one of 20 students. I made it through the school year, went home for the summer, and took stock of my situation. I made changes, and I made it out of there three years later. 

My depression and anxiety didn't resolve with graduation. My first job as a reporter meant always being on call, covering murders and deadly accidents, never knowing a holiday, and hardly seeing my parents. Perhaps I should have taken it as a sign that the newspaper had a group discount rate with a local counselor. At my first appointment, I spent the full hour talking to her but looking at her two dogs whose soft, soothing ears and warm brown eyes invited me to be honest with myself. 

My second counselor came into my life after I had triple bypass surgery that resolved a host of problems but created a new relationship with my body that I did not know how to negotiate. My third counselor and I stuck together for years, and he created an environment in which I was safe enough to explore my teenage traumas and tackle issues that prevented me from being as emotionally present as I wanted to be for my husband. 

I could not and would not have successfully navigated the past 15 years to get where I am now without help from mental health professionals. Their training in turn trained me how to help myself. Like any expert, they had knowledge that I did not. If I had wanted to rebuild an engine, I would have gone to learn from a mechanic. If I had wanted to learn how to fly, I would have gone to learn from a pilot. If I had wanted to learn how to paint, I would have gone to learn from an art instructor. I wanted to learn how to best care for my mental, emotional, and physical self, so I went to learn from a counselor. 

And there's not a single day that I regret doing so. 

Does my diagnosis mean that there's a mark in my medical file? Yes. Does that mean that I'll never be hired to become part of the CIA's spy network? Yes. Are those things more important than the fact that I am happier and healthier than I ever would have been without addressing my mental health needs? No. Is it fair that some people will and do judge me for taking this action to advocate for myself? No. Do I particularly care that they do? No because it is clear that they missed the anatomy lesson explaining that the brain is an organ—an extremely complex organ, the mysteries of which we are so very far from understanding. 

At Medicine X, I will be moderating a panel: "Depression in Chronic Illness and Coping Through Online Communities." In order to open the conversation to as many who wish to participate and address questions may not find answers elsewhere, I am asking you—yes YOU—to pose your questions to the panel. 

All questions submitted as a comment to this post between Sunday, Aug. 24 and Wednesday, Sept. 3 will be considered. Panelists will choose one question from those submitted to answer from the Medicine X main stage. Anyone interested in the conversation may tune in to Medicine X's through the Global Access Program, which will feature this main stage panel discussion from 5:25 to 6:10 p.m. Pacific Time on Saturday, Sept. 6. Real time commentary will be happening on Twitter via #MedX. 

After the conference, panelists will have the option to respond to additional questions in writing through a series of blog posts. 

Help us shape this important discussion about depression, chronic illness, and online resources. What do you want to know? Leave a comment to submit your question, and if you're on Twitter, connect with panelists at: @AfternoonNapper, @bacigalupe, @DrBeckerShutte, @ekeeleymoore, @Hugo_OC, @Strangely_TI. 

Written Upon The Passing of Peter Pan

Those who give us so much sometimes give up too much of themselves. Hearts must receive to survive or they simply bleed out.

Find what fills your heart, what sustains you. Return to it again & again. Turn away from what drains you. You deserve a whole heart.

If you carry a whole heart, seek out those who do not in order to help them. Have the patience to hold another's heart — mindfully.

So much of depression is not sadness. It is emptiness. It is numbness. And self-destruction so often is an attempt to feel anything at all.

Do not think that depression must present itself through tears. It is a chameleon-like beast, hiding in plain sight.

To "struggle" with chronic depression is real as it never ever leaves. It lives with us — sometimes in a cage & sometimes in our chest.

The beast can be tamed. It is DAMNED HARD WORK to do & no one can do it for you. It will be terrifying. It will be worth it.

Once you have the tools to tame depression, you can develop the skills. These skills never will leave you; you can rely on them to save you.

Depression is cunning, almost comfortable for its familiarity. Change — even good change — is threatening because it is new.

If we open ourselves to the possibility of happiness, we run the risk of falling into the pit of despair, so we avoid feeling at all.

But joy — JOY! — is so luscious, so warm it is worth the risk. FEEL ALL THE FEELINGS! You are capable. You can control the beast.

Ask for help when you need it & if you are not heard ask again. Ask a stranger if you must.

If you need help, just want help, think that maybe help could perhaps be worth investigating — get you some. It's good stuff.

No part of depression equals being lame or being a failure or being weak or being dumb. It's just called being human.

And never ever feel that you are alone. You are not. You may not have found your people just yet. But you're not alone.

Captain James Hook: Prepare to die, Peter Pan!
Peter Banning: To die would be a grand adventure!
Captain James Hook: Death is the only adventure you have left!

"Hook" (1991)

Robin Williams (1951-2014)

Design for Your Future, Design for Yourself

Recently faced with making a series of major life changes, a friend of mind decided to apply design thinking principles to his personal situation. He had accepted a fabulous new job that would require leaving the town he loved and long called home for our nation's capitol and doing so in a relatively short timeframe. Familiar enough with D.C., he started his relocation process with the information closest at hand — the dog and the cat were coming with him. And then he interviewed himself.

"I asked myself questions like: self, what kind of place do you want? What should it be near? What do you dislike about your current place? I made Post-Its with my must haves, wants and dislikes," he wrote.

Post-Its are a key component to the process at IDEO—the Silicon Valley design firm where my friend and I have been lucky enough to explore questions that begin "How might we..." and focus on patient-centered solutions within health care. Post-Its allow one to jot down an idea or make a meaningful doodle that is then both tactile and disposable, preserved but not permanent. From the multicolored confetti came a series of hotel stays in various D.C. neighborhoods to practice the commute to work and sample local restaurants. "In other words, prototypes," he wrote. 

I'd like to say that when I decided to approach my problem of achieving better work-life balance concerning my job as a magazine editor, my consulting and advocacy and my relationships with my family, friends and self that I too reached for my Post-Its and Sharpie. Rather I took a very literal approach to form following function. I made a flow chart, or perhaps more accurately, a decision tree. 

The goal was to determine what personal parameters I would apply in deciding whether or not to accept an opportunity. Some opportunities offer an abstract pay off while others come with cold, hard cash. Some clearly are worthwhile while others offer nothing by way of joy or enlightenment. For all there is a price to be paid, as saying yes to one thing limits one's ability to say yes to another—doing two things half-heartedly is no greater accomplishment than doing one thing well.

I spent a week on my own posing questions, redirecting arrows and contemplating additional possibilities before I sent my draft decision tree out to a group of personal advisors for review. Advocates praised it. Company managers played devil's advocates. And my friend who was designing his new life first suggested, "Seems like you are really wrestling with getting paid for doing the work you want to do," and then asserted, "Follow your damn dreams."

Following dreams inherently is easier when others believe one's dreams are worth following and thus will help make those dreams come true. I am fortunate in that this is the case for me and my dreams. It is enormously satisfying to know that those in the industry I have come to respect and admire seem to feel the same way about me. Their encouragement, partnered with my own stubbornness, has kept me moving along this path. 

Shortly after completing my decision tree, I had cause to implement its process, and accept a year-long contract to serve as administrator of an ePatient scholarship program that enables advocates to attend one of the foremost health care conferences. I also will be leading a workshop on making clinical trials more patient-focused and speaking at this conference as well as speaking at the world's premier nephrology conference. I have applied for a two-week design thinking internship with the intent of researching generosity in relation to financial giving so as to further develop strategic plans for my nonprofit and to a mindfulness in health care symposium focused on patients and caregivers within palliative medicine. If I am selected, I will consult my decision tree to determine these opportunities' return on investment. If I am lucky, this fall will be busy, financially feasible and personally and professionally rewarding. 

Too often I hear complaints from people who are so overwhelmed by what they have to do that they have no time for what they want to do. I say—put in the time and effort to determine one's priorities, to establish standards such that saying no allows one to say yes to something better. Design not for your current self but the self you want to be. 

She's Not Here Right Now

Priorities. It's time for me to get mine straight. And right now, my first priority is saying "yes" to the things that matter and "no" to the things that don't.

The problem is that I'm not entirely sure what those things are. The second problem is that I resent having to choose.

Being an advocate is not my primary job. Since becoming an advocate with a very public persona in 2011, I've kept my professional employment and my advocacy work separate. My decision was two-fold. I did not want to accomplish anything as an advocate as a result of my position. (No, I'm the head of The Economist or the like, but my name is unique enough and the magazine widely distributed enough that there are certain circles in which I am known, and it's amazing how many people think they can favor their way into some ink). Secondly, the magazine, which has zip to do with health, is not an appropriate outlet for my advocacy voice. Do I push for historical preservation and cultural conservation? Yes. Do I call for hospital-acquired infection reduction and patient engagement in clinical trials? No.

Fortunately, my primary job also is a part-time job. An argument could be made that a publication having only a part-time managing editor is less than optimal. I would agree with that argument. However, I also have greatly enjoyed my freedom to come and go as I please and never be shackled to an office or office hours — so long as deadlines were met and I could be found via email or a phone call. Whenever I travelled for advocacy purposes, I took my real work with me. The magazine tagged along from Paris for Doctors 2.0 & You to the Metro in Washington, DC for Rare Disease Day, from Vancouver, Canada for B.C. Renal Days to Cleveland, OH for the First International FMD Research Network Symposium, from Palo Alto, CA for Medicine X at Stanford to Kansas City, MO for Partnership With Patients. Sometimes I even carried on the latest print edition to strategically leave in some airport in the hopes that its presence and the boredom of a long layover would lead to a new subscriber. In that regard my part-time job has been an all-the-time or any-time job. There is not a day or a time at which I could not be working on it.

I'd imagine that most people have such jobs — jobs that occupy the mind even when they do not occupy the hands. I hear rumor of people who go to an office, put in a solid 8 to 5 and leave it all behind when they walk out the door. I am not those people. However, t was one job I had — a test proctor for state licensing exams — that was so grinding, so regimented, so much a matter of process over product that proctors vehemently were discouraged from expressing a modicum of joy or sympathy for a test taker when he or she passed or failed. Test takers were not allowed to use their own writing utensils, wear hats, wear bulky clothing, eat or drink or take breaks longer than five minutes, during which time they were allowed to stretch, so long as they remained within my direct line of sight, and use the restroom (quickly). The test we administered most frequently lasted five hours. Work days were unpredictable, their length determined in part by the type of tests given but more so by the test takers themselves. Some days it was a push to clock an hour and half. Others stretched on for 10. I lasted nine months before the $9 an hour just wasn't worth it any longer and I walked out the door.

I've found myself in the position of determining a job's worth once again. Worth is about more than money, but when there's not much money to spare, money takes a dominate role in the equation. Certainly I want to be happy. I also want to continue to have a house. Having a house makes me happier than not having a house. Having groceries makes me happier than not having groceries. Thus having a job that pays makes me happier than not having a job that pays. And the job that pays is the job I have — not the mythological advocacy job upon which, I confess, I have been hoping to stumble. Advocacy is a word that I am using broadly to characterize this work for which I did not go to school, this proclivity for all things health care related, for fostering the patient voice in medicine. This isn't about waving around a colored flag and issuing a list of complaints. This is about getting elbow-deep in the quagmire of policies and prejudices to search for answers that can help change the system. This is about listening, analyzing and doing. This is about the Kingdom of the Unwell and the Kingdom of Healers laying down arms to unite as the Kingdom of People.

For me, to be able to help someone, to be able to make change for the better, to be able to collaborate with people who are passionate about making a difference too is worth so much more than money. I've found more meaning in my life in health care (and teaching) than I ever have in publishing.

For some, this greater personal depth and purpose in life clearly would indicate a need to leave the publishing world behind and transition to being an advocate full-time. But the power company doesn't accept payment in warm and fuzzies. The resolution then is to flip the predicament — rather than lament that doing what I love does not pay, how can I make what pays into something I love? Can I implement changes such that I see as much value in my job as I do my advocacy? Can I make it worth it?

In order to give more of myself to my job, I must give less of myself to my advocacy. To have less of myself to give necessitates that I make more strident choices about how I spend my time and energy. Effective Monday, June 9, and until further notice, I am suspending all advocacy work and related social media that is not specifically related to Medicine X or my own organization, FMD Chat.

It is my hope that this self-limitation will allow me the mental and emotional capacity to return to writing, which I love, and thus my individual voice will not altogether be silenced. So please look for me here.

Should you wish to contact me, please do so by blog comment or email. 

Or... make me an offer I can't refuse. 

#HCSM Review - Feb. 13, 2014, #RareDisease Edition

The Feb. 13, 2014 edition focuses on Rare Disease Day, an annual, awareness-raising event marked around the world that aims to educate the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day will be held on Feb. 28.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. There are approximately 7,000 rare diseases. The lack of scientific knowledge and quality information on rare diseases often results in a delay in diagnosis and difficulties accessing appropriate care.

___________

Living in the Light — from Levi Gershkowitz

"These narratives are shared by individuals facing the challenges of life affected by rare genetic disease. They are aimed to promote an increase in public awareness about the prevalence of rare diseases, as well as an increase in patient advocacy."

MODDERN Cures: Who, What, and Why? — from Amy O'Connor

"More than 30 million Americans live with a rare disease, many of which have few or no treatment options. But there’s hope on the horizon. Public policies like the MODDERN Cures Act could incentivize the development of treatments and cures for unmet medical needs - such as autoimmune diseases, neurological conditions, cancer, and rare diseases."

#RarePOV Conversation Generates Strong Enthusiasm for RDD — from Stephanie Fischer

"Recap of last week’s #RarePOV tweetchat during which leading rare disease advocacy organizations and individual patient advocates came together to share resources and plans for the upcoming international Rare Disease Day. More than 100 individuals and organizations participated, generating more than 680 tweets in the hour-long conversation."

One in Billions: Rare Disease Day 2014 — from Emily Bradley

"One rheumatologist explained to me that treatment options for many rare disease patients sit, waiting, behind an “unbreakable glass wall.” Patients suffer for years—many die—because they cannot afford the few treatments available. With just enough income to keep me at the poverty line, I was unable to receive full funding assistance. I fought for that medication the way I fought to get out of bed. I fought to find resources, help, anything, anyone, while I also fought to brush my teeth every morning. I found myself constantly internally screaming, why does no one fight for me or with me?"

Rare Diseases 2.0 - A Business-Oriented Blueprint for the "RARE" Universe — from Yoni Maisel
"Collectively we have gained the attention of those who can influence and impact our futures. Opportunities exist like never before. But with almost 7,000 Rare Diseases, there will not be opportunity for all."

Para...what? — from lovehopeandcourage
"In March our eldest daughter Tayla, who was just 12 at the time, was diagnosed with a rare neuroendocrine tumour called a Paraganglioma, a Para what I hear you say…exactly! This is something we were never, ever expecting or would have ever dreamed of going through, again."

Treating illness and preventing disease with genetic testing — from The Conversation
"Genome sequencing has the potential to improve the diagnosis of conditions caused by changes in the DNA and indicate what treatments may be most effective. Importantly, it may also red-flag treatments likely to cause adverse reactions."

Dr. Groft of NIH on New Hope for Rare Disease Research and Treatments — from PhRMA

"While there has been amazing progress, the road ahead is still at times daunting as we strive to find better, quicker and less expensive methods to translate research discoveries into new interventions that meet safety and efficacy requirements. The encouraging news is that the rare diseases community appears stronger than ever, and there has been no better time in history to build on existing momentum and resources."

What are the biggest challenges for the rare disease community in 2014? — from pharmaphorum

"Patients can't benefit from new treatments and other medical advances if they can't get an accurate diagnosis. And diagnosis clearly remains an issue for the rare disease community."

Two Children, One Rare Disease and Their Mother Who is Making a Difference — from Parade
"Jana Monaco misses memories of what might have been. Her son’s first day of kindergarten. His Little League games. Prom pictures. The life experiences we all take for granted ended abruptly for Stephen Monaco almost 13 years ago when a rare disease, isovaleric acidemia (IVA), left him permanently disabled, both physically and intellectually, at the age of 3."

Advocates Fight for Justina Pelletier, Teen Held by State in Psych Ward — from ABC News
"Justina was diagnosed with somatoform pain disorder, a psychiatric condition when a person experiences physical pain for which no known medical explanation can be found, according to her family. The case highlights a growing concern among those with rare diseases and autoimmune disorders that physical symptoms that cannot be explained will be dismissed by doctors as psychosomatic."

Look to Mary Pat Whaley at Manage My Practice for the next #HCSM Review on March 5, 2014. 

#HCSM Review - Call for Submissions, Feb. 13 Edition, #RareDisease

The Afternoon Nap Society will once again be hosting HealthCare SocialMedia Review, the blog carnival for those interested in health care social media.

The Feb. 13, 2014 edition will focus on Rare Disease Day, an annual, awareness-raising event marked around the world that aims to educate the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day will be held on Feb. 28.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. There are approximately 7,000 rare diseases. The lack of scientific knowledge and quality information on rare diseases often results in a delay in diagnosis and difficulties accessing appropriate care. 

Bloggers around the world are encourage to submit their blog posts for consideration. Posts should focus on some aspect of rare disease such as a patient's experience; a provider's difficulty making a diagnosis; pharma's burgeoning rare disease drug market; social media's role in connecting patient communities; or access to research funding.

Want to participate in recognizing Rare Disease Day in another way? Join in the Raise and Join Hands Movement. 

And if you read nothing else about rare disease, read Lisa M. Jarvis' "Orphans Find A Home" from Chemical & Engineering News. 

To submit a blog post to the Feb. 13 Edition of #HCSM Review, email theafternoonnapper (at) gmail (dot) com with the following information:

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent Link To Post:
Name, Username, Nickname, or Pseudonym:
Description or brief excerpt:

Deadline for submission is WEDNESDAY, FEB. 12 at NOON (Eastern Time). 

Staircase Wit Leaves Us All Cold

Snow had fallen through the night, blanketing the mountains with an inch or more of glistening white. It was the kind of day best spent at home, but an appointment required that I drive to town.

I stopped at a gas station along the way. The station is near the corner of where my parents almost bought a house and not too far from where they actually did. It's open most hours of the night, perhaps even all 24 of the day, and is thus one of my regular stops.

A young man wearing an oversized black jacket and black knit hat pulled tight over his heat was standing directly inside the store's double doors, talking on his cell phone, as a middle-aged, female attendant mopped up melted snow from entryway. I grabbed some Reese's Cups and went to the counter to pay.

The attendant put her mop and bucket away, came to the register, opened the drawer, and began to count her cash. There wasn't much there—a twenty or two and a dozen one dollar bills for which she ran a receipt that she tore from the register and slipped inside a clear envelope along with the bills and then deposited the sum in a dropbox on the counter behind her. The young man walked outside. The attendant looked past me through the glass door. She apologized for making me wait, but the young man on the phone was having trouble. He needed kerosene, presumably for a heater, given the weather; however, his bank card wouldn't allow for an overdraft to buy it, she told me as she rang up my Reese's Cups. The young man had said something about needing the kerosene badly enough that he might "have do something he shouldn't do" in order to get it.

I pondered the attendant's words for a few seconds. At first, I imagined she meant the young man would fill his kerosene container and drive away without paying. Then I realized that she feared the young man would try to rob her. Rather than call the police, rather than lock the door behind the young man after he'd walked out, she simply had emptied her register so there wouldn't be any cash for him to steal.

"I'll stay here with you if you want," I said.
"Nah, people are still coming in," she said, once again looking past me out to the parking lot where the young man was sitting in his car, still talking on the phone.

I paid for my Reese's Cups and walked to my car, which was parked next to the young man's. I took my time buckling my seat belt. I peeled apart the crinkly, orange candy wrapper and slid a single peanut butter cup into my palm. I peeled the dark brown liner away from the chocolate. I took a nibble, and I watched. The young man appeared, more than anything else, cold. The attendant opened the store's front door and leaned against the stuccoed wall as she took a nervous drag off a cigarette. In my review mirror, I could see three other male customers busy gassing up their pick up trucks or cleaning salt from their windshields. Slowly I backed out of my parking space and headed on up the road.

As I drove, I contemplated what it must feel like to be a woman working alone in a place that's prone to draw criminal behavior. Though the gas station was in a good enough location, working as an attendant hardly qualifies as low-risk employment. There's a reason those places have security cameras and it's not to make sure the Little Debbies don't run away with the Slim Jims.

I also contemplated the small yellowish deposits on the station attendant's eyelids and whether or not I should have asked her if she knew about her hypercholesterolemia and should probably see a doctor about it.

And I thought about the weather. It was 18 degrees in the sun, and anyone without heat indeed would be desperate enough to do something stupid.

I was probably a mile down the road when I realized that I had the power to diffuse the situation and possibly impact the future. Though not well off, I certainly had $25 I could use to buy the young man some kerosene. I could do it quietly—just walk inside, tell the clerk to ring up the purchase, pay for it with my debit card, and walk out. I could wave to the young man in his car, tell him he could get some kerosene, and that I hoped it helped keep him warm. I imagined this little act of kindness would teach the young man about compassion and life choices. I imagined that the attendant wouldn't feel as afraid.

Although I was three-quarters of the way home, I turned onto a side road, hooked a sharp left, and headed back to the gas station, peering through my increasingly obscured and salt-speckled windshield. Traffic was slow through the wintery slush, and as the minutes ticked away, I became increasingly certain that the young man either would have gone ahead and done something stupid as the attendant feared he would—or just driven away.

And I guess that's what he did. When I pulled up to the gas station, the young man's car was gone. The scene seemed undisturbed. I was relieved, yet I regretted not having turned around sooner. No one needed to be without heat. No one.

I circled through the parking lot, and I imagined the attendant looking up from her register, past whichever customer was at the counter, and through the glass doors at just the right moment to see me slowly driving past. Would she think I had come back to save her or only to save myself the guilt of having walked away?

I doubt either one of us knows.

Patients, Pharma, Partners

Generally speaking, I had always wanted to beat Big Pharma with a stick. I had no personal reason to feel that way. In my vast history of patient-being, I'd never had a particularly negative pharma experience—what's been prescribed has worked with no real side effects save for some fatigue and nausea here and there. Smart patients don't just swallow their pills. They research, learn the side effects and interactions ahead of time, and discuss with their doctors the impacts. Moreover these patients tend to see Big Pharma's advertising and drug reps not as sources of education but as shill. This perception has not been about which pharma company but rather it has been of all pharma companies.

Enter Jerry.

I'd heard rumor that there were pharma guys in attendance at the Partnership for Patients conference in Kansas City, MO. I was distrustful but curious, so it was between sessions that I caught Jerry's ear. Nothing about Jerry fit my pre-conceived notion of Big Pharma. He had a liberal arts degree—A LIBERAL ARTS DEGREE! And thus my curiosity got the better of me, so I joined him, his cohorts, and a small group of my fellow patients in a discussion about the clinical trials process. Jerry made introductions and explained the concept behind the Clinical Open Innovation team. How strange, this pharma group wanting to listen to patients! And indeed they did listen, not as Big Pharma (because frankly I still doubt that Big Pharma is capable of listening) but as humans. So I did something that I don't tend to do. I decided to trust, and specifically I decided to trust Jerry.

Patient advocates work in a troubled environment. We need acknowledgement and help from the very system we are trying to change. As a result, and as a result of human fallibility, patient advocates thus end up in relationships in which they are bought or simply used. At least those advocates who are bought, receive compensation for their work, while those who are used fall prey to flattery: I respect your opinion, now hawk my product. I recently had such an experience in which an app developer with an extensive Ivy League education continually asked me to "spread the word" about his app. I asked him to delineate exactly what he meant by "spread the word," as my time increasingly was limited and I was being forced to choose among projects that would or would not have a clear benefit for me. I asserted my worth—as an advocate, as a patient, as a person—and he suddenly stopped interacting with me.

However, Jerry always has been respectful of my time and energy. In the year that followed after meeting Jerry, he continued to reach out, and each interaction bore his continuity of authenticity. He went out of his way to maintain contact and ensure that my voice was being heard. We didn't talk Eli Lilly. We talked patients. My trust never was disappointed, instead it continued to grow as Jerry bought in to my own mission with Medicine X—a conference about medicine and emerging technologies held at Stanford University—and recruited company employees to attend what I billed as the most transformative medical conference in existence. It was a joy to plunder through MedX's Flickr stream from the IDEO Design Challenge to find a picture of Jerry in a wig, acting a part in a skit demonstrating the patient-centered solution to a patient-generated problem his team had helped devise. He was not only in, he was all in, so as plans developed to bring patients to Eli Lilly's headquarters, I too was all in.

Though my opinion of Eli Lilly had shifted, I was nonetheless keenly aware of my role in infiltrating the belly of the beast as I pushed through the revolving glass door at the company's headquarters in Indianapolis. Company headquarters say so much about corporate values. Instead of shiny black marble and self-congratulatory monuments, natural light, real plants, straight lines, and colorful but natural tones characterized the building. We convened in a perfectly normal room—no pomp, no excess, no board room tables or over-stuffed office chairs—and as comfortable as it all seemed, it continued to be. There were three times as many Eli Lilly employees as patients, an indication not of our exclusion but of the perceived value of our inclusion. In making their introductions, company employees shared more than a name and a title. They shared of themselves, and then they too, as Jerry had done time and time again, listened, and they asked questions, and they listened some more. What’s more is that through some miracle of persistence and possible soul selling to the corporate legal department, we patients were allowed to share our experience in real time via Twitter such that even more people were drawn into the conversation about how to make clinical trials more patient-friendly.

On one hand, I don’t know what we achieved. We didn’t solve the world’s problems when it comes to getting more patients involved in research and making research findings more open and accessible to the public. However, according to a blog post from Eli Lilly’s Clinical Open Innovation team—a post Jerry authored—there will be more workshops like the one I attended, workshops that rely on collaboration to improve the process.

Too many relationships within healthcare are adversarial. By classifying friends and enemies, we add bricks to the very silos we are attempting to break down. While it is inevitable that our goals will not always align, we must open ourselves to conversations that discover likenesses while exploring ways to resolve our differences.



Author's note: Gerald J. Matczak 54, Indianapolis, passed away Feb. 2, 2017. He was a Clinical Innovation Lead Consultant at Eli Lilly & Co. He was a member of Traders Point Christian Church and the Indianapolis Ambassadors. His father Gerald J. Matczak and brothers Joseph S. and Daniel T. Matczak preceded him in death. Survivors include longtime companion Nancy J. Miller; his mother Donna Matczak; sister Sharon Staunton; niece Chelsea Marks, nephew Michael Kristophel and their children. Visitation will be from 4-7pm Mon. Feb 6 at Matthews Mortuary, Brownsburg, with funeral services there at 10am on Tues. Feb. 7.

Crowdfunding Creativity

For as involved as I am in the national (and, at times, international) healthcare social media community, I find myself in a local void. The mountains I call home are not the epicenter of anything to do with healthcare or social media much less the two together. I've been chipping away, trying to carve out a foothold such that the wealth of education and opportunity found in healthcare and social media can enrich the lives of those I routinely connect with in real life as it has my own. It's slow going. Every fear, every socio-economic force that pushes back against the #hcsm tide can be found here. But today... today made a new friend.

As like minds are prone to do, @SociallyMD and I connected first via Twitter. Lo and behold — we live a mere 20 minutes apart. Prior to departing for Stanford's Medicine X conference, I suggested that since we were the only two Tweeps occupying the local #hcsm space, @SociallyMD and I should meet. And meet we did, instantly connecting professionally and personally and taking up much longer than the allotted lunch hour. I was, in a word, joyous to have found a compatriot.

However, my new found friend issued an unexpected challenge. As we talked about my MedStartr project to crowdfund studying at Columbia University's Narrative Medicine program in November, @SociallyMD shared with me about his own creative endeavors — healthcare was not his first love — and how personal changes forced him to find new ways to be creative. My curiosity was piqued. How does one go about finding new ways to access his or her creative sweet spot? His response shook my confidence the way one shakes the dust from a rug, "If you think you're so creative, why don't you find a new way to be creative?"

His statement rolled around in my head for most of the afternoon and evening before I realized a link to my experience at the design and innovation consulting firm, IDEO, in Palo Alto in 2012. Founder and ingenious devisor extraordinaire Dennis Boyle led a tour through the company's offices, explaining the IDEO philosophy and from where designers look for inspiration. Boyle said that it's the "have nots" who bring the most ingenuity to the world — those who need to accomplish a task without having the resources they need. In the grand scheme of things, I consider myself to be among the privileged in the world. I have shoes. I have running water. I have a microwave. I have a roof and a bed and an education. I also have friends — friends some of whom I've never met but who believe in me and my desire to go, to do, to learn, to change.

All these things I have are what will enable me to find a new way to be creative. With your help I am honing the tools of my trade from within.

Project Columbia - 25 days and $1,395 to go!

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.

A Circle, A Stroke

Dusk had fallen as I nosed my car up to the locked gates of the small elementary school on the north side of town. I turned off the ignition, removed the keys, opened the car door, stepped out onto the pavement, rounded the back corner of the car, and waited for my husband to pop the hatch. He reached inside, both hands gripping aluminum and rubber, and pulled out my new lime green and toothpaste white bicycle.

"I am 33. I am 33. I am 33," I chanted beside him. It was as much to myself as to any passerby. Standing only five-feet-tall and dressed in pink shorts and a purple shirt, I looked the daughter to my husband's six-feet-tall-and-bearded father.

"You got it?" he asked, one hand on the bike as the other reached up to close the hatch.

"Yeah," I said, rolling the bike along with me toward a small footpath alongside the gated school driveway.

The empty school parking lot had been my idea. It was Sunday and school was not yet back in session, so the parking lot satisfied my two requirements—there would be no audience, and there would be room to careen haphazardly without hitting anything of worth. My knees, palms, and head were another matter altogether.

It had been at least 15 years since I'd last been on a bike. As a child living in the mountains, I was at a loss for flat places to learn to ride, and thus didn't until age 12 when, after my grandmother's funeral, I found an old bike in her basement. In the Jones' Fish Camp parking lot, my father ran along beside me, holding on to the back of the bike's seat, as is apparently the only way in history man has ever devised to teach a kid how to ride. I suppose it's marginally better than the float or die method of teaching swimming.

That summer my father gave me a bike for my birthday. The bike was emerald green with knobby tires and 18 gears for climbing hills. I didn't like hills. Going up one was hard, but worse yet was rolling down one backwards, as I constantly feared would be my end. I didn't like going down hills forward either, which I blamed on my sixth-grade teacher. Her son was riding his bike too fast when he hit loose gravel. He and the bike slid out of control across the pavement, tiny rocks carving into his skin. He was hospitalized and for days on end subjected to hot tub soaks to soften his skin that was then scrubbed with a wire brush to expose and expel the grit and debris. His screams echoed throughout the hospital.

At least that's how I remembered the story, so I rode slow. I was a mountain biker burdened with a creative and vivid mind bent on imagining my severe injury at every corner and creek crossing. Though I disliked hills, I very much liked riding down trails so rocky that no earth showed through and my mind maintained such a narrow focus on picking the path of least resistance that there was no room for fear.

Thankfully my accidents were few. There was a run in with a sawbriar that ripped a now tiny scar into my left thumb. There was a drop-off that well bled my right knee. I nearly passed out once and did pass out on a ride up an old gravel road, which scared my dad, but the doctor ruled that I'd simply not had enough time to digest my morning pancakes.

I didn't take my bike to college. I wasn't comfortable riding around so many people and in such tight quarters. The majority of other students seemed to agree, and historic brick sidewalks took care of the rest. By then Dad's knees weren't what they used to be, and our bike riding just stopped.

When I had a stroke at age 28, bike riding was the last thing on my mind. I wasn't sure that I would be able to walk again unaided, much less command any sort of transportation. It took six months for me to get back to driving, and then I only allowed myself to go out during day-light hours on familiar roads at low speeds and with a chaperone. It was a tremendous victory when I had built up enough confidence to go the 1.8 miles to the grocery store alone.

Five years later, there are hardly any outward effects of my stroke. Those who know what Horner's Syndrome is—the drooping of an upper eyelid caused by a stroke's damage to the sympathetic nerve system—can spot it once I mention my history or I'm exhausted. However, the residual loss of pain and temperature on my right side isn't visible, nor is the fact that I can not walk with one foot directly in front of the other, as I need a wider base to maintain my balance.

Balance has been my greatest hindrance to re-establishing a "normal" life post-stroke. One really never realizes how often he or she stands on one leg, reaches for something far away, takes the stairs without using the railing, or walks somewhere carrying a cup of coffee until one is unable to do so. The ability to perform these extraordinarily simple tasks took years to get back. Along the way, I was accused of being drunk or high and given dirty looks for making use of handicap accessible facilities because the public didn't perceive me as someone who could be a stroke survivor.

Any stranger looking on as I stepped astride my shiny new green and white bicycle in that elementary school parking lot wouldn't have seen a stroke survivor either. Any stranger would have seen a hand grab tight on my arm as my first attempt to get both feet on the pedals left me hopping and falling over. Any stranger would have heard my husband's flip-flops scuff to an abrupt stop as on my second attempt I pushed off, turned the wheel too hard to the right, screamed wild-eyed with indefatigable grit, and hauled off for the far end of the parking lot laughing. Any stranger would have seen me gently squeeze the hand brake, lean into the curve, and ride wide circles around my husband as he called out, "You look good!"

Any stranger would have perceived the nothing out of the ordinary, the everyday; yet sometimes I feel that the stranger is me, as I push to discover who I am now instead of dwell on who I used to be.