29 September 2011

The Creative Doctor

There's something to be said for those ubiquitous, out-of-date and well-thumbed magazines littering doctors' waiting rooms. One recent afternoon, I stumbled across a fascinating article in the October 2010 edition of Smithsonian about a law professor turned art historian who is teaching New York cops the arts of perception and description using great works of art. In short, classes of cops gathered at the Metropolitan Museum of Art and were asked to describe portraits without ever using the words "obviously" and "clearly"—two words that instructor Amy Herman says are too often used when a situation is anything but. What may be obvious or perfectly clear to one person may not be to another. Officers also were not allowed to point in the direction of what they described. The location had to become part of the overall description. The power of the class is summarized in a quote from Lt. Dan Hollywood who works a grand larceny task force. "Instead of telling my people that the guy who keeps looking into one parked car after another is dressed in black," he said, "I might say he's wearing a black wool hat, a black leather coat with black fur trim, a black hoodie sweatshirt and Timberlands."

Working with cops is a natural outgrowth of Herman's initial course in perception and description taught to an entirely different but no less important group—medical students. The power of description, though often subjective, can make all the difference in understanding a situation, what has happened, and what needs to happen. I can speak only as a patient, but contemplate the different conclusions drawn upon the following two descriptions: 1) My stomach hurts. 2) I have an excruciatingly sharp and unrelenting pain in the upper right side of my abdomen just underneath the rib line; this is the most severe pain I have ever felt. Which description will lead chewing some Tums? Which description will lead to an X-ray and discovery of a gastric rupture?

Effectively and clearly communicating with doctors is one of the best things a patient can do to improve the doctor-patient relationship and provide doctors with the information needed to best provide care. Doctors can do amazing things, but they are not psychic. Excluding situations in which the injury is obvious—say a broken arm—a doctor cannot simply look at a patient and determine everything and exactly what is wrong. That's why doctors ask questions. They're not interrogating or judging—they're getting information. How well a patient provides information can have a direct impact on his or her care. How well a doctor can relay that information to another doctor impacts how doctors communicate about patients and their care and how doctors may learn from one another, regardless of age, stature, and education.

In my English classes, I use a variation of Herman's method to teach students how to use adjectives and adverbs. Starting with the sentence "The tree fell," I ask students what they picture. Is the tree a dogwood sapling or an ancient oak? Did the tree come up at the roots or did it crack at the trunk? Did the tree crash down in the middle of the night, collapse in a snowstorm, or blow over in a hurricane? Did the tree fall on the house or out in the field? The point is not to encourage flowery and verbose writing, it is to teach students that if they want their reader to see what they see in their mind's eye, they must first tell their reader what to see.

The lesson gets to the heart of Jay Parkinson's talk at the Medicine 2.0 Conference at Stanford University. "The medical culture just isn't uncreative, it's almost anti-creative," Parkinson said. Parkinson is a doctor who graduated from Penn did residencies at St. Vincent's and Johns Hopkins. He also is creator of Hello Health, a cross between a social network and an electronic medical record, and the design firm Future Well. He believes that solving problems in the healthcare system isn't necessarily a matter of technology or funding or any other linear solution. To change the system one must change the culture. To change the culture, doctors must be taught to do more than regurgitate facts. They must embrace creativity, which in turn leads to innovation.

Parkinson discovered his own talent for photography while in residency. Not only was he good at it—Rolling Stone is one place to find his work—but photography provided him an outlet for expression. Parkinson advocates med schools teaming up with design schools and business schools to get creative juices flowing and give med students something to dream about outside their immediate field. If that's what it takes to make creativity part of the med school curriculum, so be it; however, creative outlets need not become major endeavors that spawn second incomes, and one need not even be good at his or her creative outlet of choice. The point is in the doing of it. One may bake—and bake badly—but the experience is still there, and if it is a passion, then experimenting and learning will occur so that in the end one has not just a satisfactory experience but a satisfactory product as well. "If you're going to innovate, you have to be wrong a lot," Parkinson says. Innovation itself may take on different forms from creating a brand new flavor combination for extraordinary cookies to a new surgical technique.

Those who engage in these creative endeavors are the ones who are the future of medicine, Parkinson says. "It's sad to me that medical schools look for the highest GPAs, the best med/MCAT scores, the people that can brown nose their way to the top," he says. "Those aren't good doctors, I'll tell you that much—it's the people who are well rounded, who are leaders, who have the courage to think differently and inspire us all."

26 September 2011

Challenge: SoMe Recruitment

I will be the first to tell you that I was slow to get on the social media bandwagon. Heck, I eschewed technology in general. My iPod mini—the one that came out in 2005—was a gift. I refuse to buy a new one because my little green, black and white screened one still works, and really I don't use it that much. I still buy CDs for the most part. I do not have a Kindle or the like. I prefer real books. My phone is a feature phone.

However, this year it seemed that I couldn't much ignore the technology going on around me. I stopped driving a stick shift Subaru and bought an automatic Scion, which has a USB port and a kickin' stereo, so I bought two eight gig jump drives to hold my music—I load them using my 2006 MacBook, and my iTunes is filled with music from my own CDs, save for podcasts of This American Life and Prairie Home Companion the very existence of which I find ironic. We finally got a flat screen TV earlier this year—it was an open box deal, and the high pitched whine of the giant lurker in the corner had just gotten to be too much, but we won't pay for HD cable. I traded my PlayStation 2 that I never played for a Wii that I never play. My husband and I received a TomTom GPS unit as a gift, and I'll say we like that when we travel. I love my new Canon PowerShot SX 230HS because it doesn't take four AA batteries like the model we replaced.

So with all that personal technological progress, it was no real surprise when I also joined the Twitterverse. Granted there were two work accounts that I was part of managing. We created the accounts because we felt like we had to create the accounts—not because we wanted them or knew what to do with them. Each account has a couple hundred followers and is listed. I created a work account for myself, again because I felt like I should, like it would help boost our presence. My Tweets are rather devoid of personality and engagement seems low, though again there are a couple hundred followers, and I'm on a few lists. Our HR rep was kind enough to create an account too. She seems to alternately enjoy reTweeting my Tweets and heckling me.

Then I wrote a blog post. I'd been blogging in one form or another for a few years, first on MySpace (ha! remember MySpace?), then via notes on Facebook, and then via this blog here. Blogging has been a more natural outgrowth because writing is my profession. It is how I earn money and how I blow off steam and get out what's in my head. I began this blog to address issues that came up in my first year of teaching. But since I am also a chronic patient, personal health matters crept in from time to time. And I like to garden. And I am a wife. And I care about the environment. And so many things. Defining myself is difficult. Editing myself down is difficult. And I blogged about that. And the next day, AfternoonNapper was born.

AfternoonNapper is an attempt to separate out some of my interests and identity from the rest of my interests and identity. AfternoonNapper likes, above all else, naps and particularly those in the afternoon. She also is a self-proclaimed health activist in that she cares passionately about improving healthcare and patients' ability to communicate with their doctors, caregivers, and selves. AfternoonNapper also likes to be a little snarky and amusing. She may—may— have Tweeted a comment at Stanford's Medicine 2.0 about BJ Fogg needing to get more sleep so that he'll look better while swimming naked, which is only a joke that those at Medicine 2.0 will get—but trust me, it's EXACTLY the kind of thing that someone should Tweet in reply to a keynote speech by a Stanford professor and behaviorist of great renown.

It was the creation of AfternoonNapper that led me to Stanford. I learned of the conference scholarship through Twitter. I connected with fellow ePatients and scholarship recipients through Twitter. Twitter has opened up my world to an amazing wealth of knowledge as I discover doctors and patients and health organizations who are doing cool things and working to change the world. Even though the insights comes in 140 character blurbs, they can be profound. I have made more truly useful connections via Twitter in the few short months I have been using it than in years of MySpace and Facebook put together. Who knew? That said, Facebook has recently been of great emotional support because it has allowed me to connect specifically with other fibromuscular dysplasia patients and message back and forth with them on a more personal and detailed level.

The lesson to be garnered is this—don't discount social media. Yes, it's got a bad rap. Yes, there is a ton of wildly unreliable information floating around out there and social media promulgates it. Yes, there are mean and ignorant people who using social media to spew hatred and fear monger. Yes, texting language will make your brain rot. But when used for its highest and best purpose, social media is amazing. It allows our words to reach beyond our communities. It allows others' words to reach into our communities. It is our responsibility to make sure that we capitalize on social media's highest and best use. We must each take on the task of ensuring that what we're putting out there is adding to the dialogue. (Or telling a good joke. We can always use a good joke.)

The very ability of social media to connect us with like minded people is its flaw. It is easy to converse with those with whom we agree, and so we very well find ourselves preaching to the choir. Social media allows for a larger collective of opinions—agreements and, more importantly, disagreements that serve to awaken the thought process, illustrate differences, and highlight areas where additional discourse is needed. Though we can not ensure that those on the opposite end of our spectrum will listen to us, we can at least listen to them and use their arguments and ideas to shape our own; just disagreeing with someone doesn't mean that all their points are invalid.

Therefore my challenge is this: get someone new into social media. At Stanford, the focus was on the role of social media in healthcare. Many doctors and ePatients were ardent advocates of using social media. Many were ardently against it. For this group, I say—try it. Start a Facebook page for the practice. Offer tips on eating well, updates to billing practices, even pictures of the trees outside the office front door changing colors with the season. Start small. Start somewhere. Get on Twitter. Even if you don't Tweet, follow those who do. Outside the health community my challenge is much the same—bring someone new to the social media table. Run a non-profit organization? Let your volunteers Tweet about why they got involved. Own a design business? Tell folks about how good design is not as available to those in need as it is to the wealthy. Information is more accessible than ever. We must ensure that information has meaning.

21 September 2011

Waesuck Wednesday: Air Travel Edition

When I was younger and more limber, I liked flying. These days any trip longer than two hours feels like an eternity. Coming back from San Francisco on a redeye flight was an eternal hell. We left San Fran at 11:30 p.m. (2:30 p.m. East Coast time) and arrived in Atlanta at 7 a.m. There was a screaming toddler on board, and my restless leg syndrome was acting up, so there was no sleep to be had. Once at the gate for the flight from Atlanta home, we—dignity be damned—passed out cold on a row of chairs for an hour only to be awoken by the rising din of waiting passengers and giggling flight attendants. Someone make me a millionaire so I can fly first class next time.

The Guide to Sleeping in Airports
Why spend money on a night in a hotel when an inflatable raft on the airport floor is free? Sure, it may sound a little cheap and degrading at first, but read-on and you'll soon discover a travel community that (for almost 15 years) has been sharing their airport sleeping experiences and travel advice with fellow airport sleepers around the world.

How to Sleep on a Plane
With the closed-mouth solemnity of a dignitary lying in state, airplane sleepers seem to me shamanistic. They’re at one with the Virgin Atlantic or JetBlue heavens. In the passenger murmur, overhead beeps and engine hum they hear a lullaby.

Pilot Fatigue
In the past 20 years, more than two dozen accidents and more than 250 fatalities have been linked to pilot fatigue, according to the National Transportation Safety Board (NTSB).

When I Grow Up

As a child, I knew I wanted to be a writer—or maybe a lawyer—but mostly a writer. Writing was what I was good at and what I enjoyed. I always made As in English, and I won a few awards. I became the editor of our high school yearbook, and for the first time the yearbook was completed early and turned a profit. With my extra time, I started a school literary journal. Such things looked good on my application to UNC-Chapel Hill. I was accepted. One night—torn by practicality and personality—I cried at my family's kitchen table, "All I want to do is be an English major!" My father, an attorney, walked out of the room cursing.

I majored in journalism—the working man version of an English major—with a concentration in graphic design and outside concentration in political science. I volunteered with a student-run program called Journalists United to Maximize Potential in which we worked hands-on with sixth, seventh, and eighth graders to produce a school newspaper. I joined the staff of The Daily Tarheel, working my way up to managing editor. Over various summers I interned in the public relations offices of Western Carolina University, the North Carolina Center for the Advancement of Teaching, and the Morehead Planetarium. I graduated. I got a newspaper job. I hated it. I left.

I got a new job. It was better. I moved up the ranks from reporter to special sections editor. I am now the managing editor of a nationally published magazine. I also teach English to remedial level students at the local community college. I am months away from finishing my master of liberal arts degree with a focus on writing and literature. My graduate work led to my being selected to present a paper at the First Graduate Liberal Studies Conference at Georgetown University.

Despite these accomplishments, despite my continued upward momentum, I still feel so green, so filled with wide-eyed wonderment at all the possibilities the world still holds. My life is not a matter of what I have done but of what I have yet to do. Such promise is exhilarating and terrifying. What a gift to awaken to the realization that the best is yet to come!

As the lucky recipient of a scholarship to Medicine 2.0 at Stanford University, I spent the past weekend discovering my life's next path. The three-day conference in the sunshine resplendid city of Palo Alto brought together a true meeting of the minds. I learned about the integration of social media into healthcare—of interest to me as a writer, a public relations/marketing geek, and as a patient. The lessons were invaluable and will serve as motivation for many months worth of blog posts, tweets, Google+ and Facebook updates. However, the technical lessons pale in comparison to the lessons learned from the host of passionate and compelling speakers and attendees. I am enthralled. I am engorged with excitement. I am ebulient.

Conference guest speaker Jennifer Aaker, General Atlantic Professor of Marketing at Stanford and author of The Dragonfly Effect, spoke of the effect of small acts creating big change and her selection of the dragonfly to represent that ability—by using its four wings, the dragonfly can fly in any direction it chooses. This is me, happily learning to exercise all four wings.

17 September 2011

On Site @ Medicine 2.0

My formal reflections on the experience of being at Medicine 2.0 will come later. Honestly, I'm not even sure that I can blog in the daylight.

I want to say this though—thank you. Thank you to everyone who is here. Thank you for listening and engaging and caring. Please carry the lessons you have learned back home, but do not keep these lessons locked in your head. Share them. Talk to colleagues. Talk to supervisors. Don't just talk to colleagues and supervisors who have a pre-existing interest in the topics covered. Seek out those who actively avoid the topics. Do not brow beat. Who ever wanted to get involved with something that a dour, angry person proposed doing? Be enthusiastic. Enthusiasm is contagious.

14 September 2011

Waesuck Wednesday: Personal Enemies Edition

My students just turned in their first round of journals. Reading student journals is always an enlightening and often emotional experience. Sometimes what students write about themselves is just so honest it hurts.

My class is a remedial level class, so I am accustomed to dealing with those who have difficulty reading and writing. It's not uncommon to discover an undiagnosed learning disability such as dyslexia. Working with these such students is not for everyone, but it is exactly what I love to do. So much of the job is not a matter of subjects and verbs but of self-esteem, study skills, and a sense of caring. Students having been told that they aren't smart enough and aren't good enough to succeed and be worth of success is an all too common refrain.

One student in the class came with a special note from student services that he has a learning disability and that certain accommodations were approved to help him with his studies. The student and I briefly discussed the matter one day after class, and I told him that any time he needed assistance to let me know and we'd make it happen. Since the first day he's been quiet and polite, always on task, and with grades in the middle of the pack. When I came across his journal, I was curious to see how his writing would play out. I was surprised. Though there were bobbles, there was also a voice. The writing was more clear and coherent than several students' who have not been diagnosed with a learning disability. And one of the points that the student made loud and clear was that he was embarrassed by his disability, that it was one more thing that made him feel not good enough. He worried if he was even smart enough to be in college. He said he felt like the weak link in his family and that he'd grown up without a strong male role model. He said he wanted to use his interest in wresting to start a youth wrestling program for kids in grades 3-6 to help keep them out of trouble because where he came from gangs were a problem. He said he wanted to be the role model to these kids that he'd never had.

I wanted to kick somebody. Who could be held responsible for this kid, this charming, well-spoken kid—he even used the word horrid to describe his skills—not believing in himself? Who didn't do their job? Who let him down? In a word—adults. We have a responsibility to encourage kids to believe that with hard work they are indeed capable of doing anything in the world. It's not a matter of undeserved praise and false coddling. It's a matter of pushing them to see that they have the power to be what they want to be. It's a matter of giving them the support they need to grow. It's a matter of celebrating successes and failures and what the experiences can teach.

The unfairness of the world makes me so angry. My choice is to respond with as much love and compassion as I can muster. I do not delude myself into thinking that I can undo the past; however, I am intent to affect the present. If nothing else, this kid will know that I'm in his corner. He will know that I do not think him stupid, or not good enough, or not able to succeed. He will know that, in my eyes, he has all the potential in the world.

08 September 2011

Disease Envy

I am so very jealous. I am jealous to the point that I am angry. I am jealous to the point that I scoff in your general direction. I am jealous because you have cancer. Or diabetes. Or rheumatoid arthritis. Or Parkinson's. Or lyme disease. Or just about anything else. I am jealous because you have it and a bazillion other people have it and because you and those bazillion other people have each other. And I feel so very all alone.

Being diagnosed with intimal fibromuscular dysplasia first came as a relief—I got a name for what has been wrong with me. Within days of my diagnosis, I saw a post on the Mayo Clinic discussion boards from a young woman suffering gastrointestinal problems who had passed all GI workups with flying colors and who, despite medication, had uncontrolled blood pressure. The symptoms echoed my own. Another woman named Kari responded that the young woman might want to have her vascular system looked at—a comment with which I completely agreed and found unusual for someone to make. I posted as much and in no time Kari and I exchanged messages and discovered we share the FMD diagnosis. Since then I have made friends online with twelve other FMDers.

Read that again—twelve. Granted, I'm new at this, so I haven't met the other 70 or so people who "like" the FMDSA's Facebook page. Some of those who like the page aren't patients though—they're friends and family members of patients. Using those numbers, FMD patients number fewer than two per state. No, not everyone who has FMD is on Facebook. No, not everyone who has FMD has been diagnosed. But COME THE FRIG ON! We're like some freakish pygmy tribe, and the grand irony is that we'd be jerks to want more tribal members. FMD has no real treatment and no cure. Who would wish that on anyone, even if it meant a new friend? "You have FMD? I have FMD! Let's get sick and die together, yay!"

As even further isolation, I do not have the primary form of FMD. I have the rare version of the rare disease. I've met one other girl who has it. She lives in South Africa. I've asked around the FMD community looking for other IFMD patients. So far—no luck. It's me and my new South African sister. She is younger than I am and is scheduled for a desperately needed surgery to bypass her abdominal arteries—the same surgery that I had at age 25—and with the same doctor in Cleveland who made my diagnosis. However, she's traveling to the United States from South Africa, which costs a pretty penny, never mind the surgery itself. If you've got a mind to get involved and help her cause, that would be awesome. I really can't have her going out on me. Do you have any idea how it would feel to be the ONLY person I know with IFMD?

And so I'm jealous. Jealous of all you people with your more common diseases that everyone knows someone who has. Jealous of your theme colors (particularly you breast cancer patients and your pink—really co-opted that one there didn't you?). I'm jealous of your fun runs and baseball theme nights and famous spokespersons. In reality, I get it. The diseases that get all the attention are the ones that have the most likelihood to occur. They're the diseases that people have learned to be afraid of and so great research is done to find their cure and great shows of comradeship and support are made. I get it. Having a more commonly occurring disease is still a potentially devastating experience, and an individual's suffering is made no less simply because a disease is a household name.

However, I am asking you all to do this—please think of the others of us who have a rare disease. Please think of those of us who do not have the awesome numbers and networks and funding and fights for a cure. Support us because so few do. Support us because you've never heard of our disease. Support us because we're not going to send you address labels or a fancy calendar or a t-shirt to wear out jogging. Support us because we're lonely and we're scared—just like everybody else.

Donate to the National Organization for Rare Disorders
Learn about Rare Disease Day

07 September 2011

Waesuck Wednesday: Buddy Holly Edition

Today would be Buddy Holly's 75th birthday had the genius rocker not plunged to his death in a plane crash at age 22. He's been ranked as one of the greatest artists of all time and was one of the first inductees into the Rock and Roll Hall of Fame. Buddy was one of the singers that my mother and I would listen to when I was little, and so it's often her voice I hear singing along when I'm rocking the "Best of" collection in my car.

The Buddy Holly Center
A historical site with dual missions; preserving, collecting and promoting the legacy of Buddy Holly and the music of Lubbock and West Texas, as well as providing exhibits on Contemporary Visual Arts and Music, for the purpose of educating and entertaining the public.

Artsy Buddy
Check in on what the fun and varied crafters at Etsy have been doing with Buddy as their inspiration.

First Listen: "Rave On"
An impressively diverse collection of takes on the innocence of another era. Listen to a few of the tracks, including the Modest Mouse cover of "That'll Be The Day," here.

The Problem of Being a "Patient"

There is a woman who graduated in the top 10 percent of her high school class and was accepted into the University of North Carolina at Chap...