Keeping it Real

This is my second year painting an image that represents the wonder that is Medicine X at Stanford.  The painting this year is called “Such as These.”   The title is a literary reference to the New Testament passage where Jesus chides the disciples for turning away messy and exuberant children.  I thought that a powerful concept as we reflect on an event that invites all of us to the table.

I focused on children this year.  In the world of art, when children are depicted at all, they are often depicted as adults in miniature.   But children are far more than that.  They are flexible in limb and mind.  One moment a child’s face can break with sorrow as tears freely fall and in the next moment a peal of laughter will fill the room.  Children show such a range of emotion even though within our culture they are usually depicted as happy smiling creatures.

Often in fine art, children are accessories within a composition.  They provide a still structural support within a scene and are not the focus of the piece.  Here I paint them in all their glory of action and importance, even if their world is considered small compared to our own.

So we enter the world of metaphor and the patient becomes the child.  For within the world of a medical conference patients are often relegated to this role. We are overly emotional, messy, uninformed, and ignorant; we tend to interrupt our elders.  Very often we have special tracks and patient speaker panels that are attended by other patients but very few professionals join us at the children’s table.

But if we patients stray within the realm of the professional and like any observant child pick up the turn of phrase and jargon of the world of medicine, if we talk as they do, why then, we are considered “professionalized” and no longer in touch with the common man.  What a dilemma for the epatient or patient advocate to face.

Not long ago my friend ePatient Dave, or Dave deBronkart  as he was once known, shared with me the negative comments a member of industry used when describing my speaking style.  The gentleman said I was not real because I cried at the same time in two speeches.  Well, try as I might I cannot change the past.  It sad every time and most times I cry.  But like a child, I can leave the tears behind and within moments focus on a brighter future.   Yet this process is painful; each night after the speech my eyes hurt and my soul mourns.

I decided to reach out the gentleman who misunderstood me so.  It turns out seeing patients enter the world of medicine and lose their authenticity had frustrated him.  I explained each person is different, but having lived through a childhood abuse allows me to go from experiencing obvious sorrow to being able to talk about the intricacies of health policy within moments.  I told him that being beaten and then having to answer the door with a smiling public face is lesson you do not easily forget.  I also said there are patients who cannot return so easily from darkness, but you do not see them speak anymore because this job became too much for such as these. 

He continued to share his concerns that patients weren’t keeping it real and growing too distant from the source of their passion.  I acknowledged his view but stated we each have different ways to stay in touch with day-to-day concerns of regular people.  I still work in a toy store and talk of child development and patients rights in the game section.  I still do painting with children and introduce them to the concept of participatory art.  Not to mention with each Walking Gallery jacket I paint, I dive deep within the playground of another patient’s mind. 

The gentleman apologized for thinking ill of me when he really did not know me.  I look forward to having a chance to walk with him again in the future.  Apologies are rare within this world and should be cherished, as should be the willingness to talk about hurt feelings.

Which brings us back to children and this special painting. Here within the scene a child pours tea for another.  The serving child is concentrating on the task and the recipient of the tea looks at the viewer.  He or she is an androgynous beauty who looks upon us but also slightly beyond, perhaps focusing on a field of questions that must one day must be answered.   To their left a young girl proudly hefts a flag before her that billows in the breeze.  The flag is Stanford red and emblazoned with XOXO, hugs and kisses from this conference to those who will join us at the table.

In the center of the composition an African American boy stares into the distance while another child checks his ear with a toy otoscope.  The boy’s face holds a fleet of emotions from frustration to concern.  His clothing is the same color as the sky and other than his questioning visage he could easily disappear into the background even though he is placed center in this composition.   Sometimes we do not see that which is right before our eyes.  Below the table a child looks up with a happy smile and offers a flower to her friend as the puppy Zoe completes the tableau.

To the right a red haired child stands tiptoe carefully constructing a familiar tower and the word medicine.  He only has eyes for the world he is building and his countenance is one of peaceful work.  To his right a girl in her skinny jeans holds her teacup as she looks with serious concentration at her smart phone.  Which based on her expression, I do not believe is a toy.   

That is the Medicine X painting for 2013.  That is the energy and communication of the children’s table.  This is a place where tears and laughter meet.  This is a place where feelings may be hurt but we talk about it and say we are sorry.  Welcome to our table.

The Monster, the Mythos and Medicine X

What does the television program Supernatural have in common with Stanford's Medicine X? That will take a bit of explaining…

The world of the televised science fiction/horror serial is not so distant from the world of medicine.  I find one often emulates the other and can often be analyzed using the same tools.  When I am in a call focusing on the message of HIT, I remind folks to remember the Metanarrative.  Technology is not the most important part of our discussion. The overarching patient story must be considered equally significant.

How do you explain story?  I recommend using story itself. 

Back in 1993, The X-Files changed the world of the sci-fi narrative.  Not only did it add valuable catch phrases to our lexicon, such as “The Truth is Out There.”  It set up a contentious dyad in the characters of FBI agents Fox Mulder and Dana Scully. Here belief confronted skepticism on a weekly basis. In each episode, the characters would investigate an X-File: the odd, perhaps paranormal cases that filled the cold case files.  These X-Files were beyond the normal range of FBI investigation and any agent who voluntarily studied them was considered suspect.

Each week the audience would watch Mulder believe and Scully attempt to debunk the cause of the X-file.  They would confront human horrors, monsters and aliens.  This weekly dance of the macabre has a grand history in the televised narrative and is used in classics such as Star Trek to camp favorites like Friday the 13^th the Series. This convention is called “monster of the week” and does not require a continuous narrative.  Often in “monster of the week” programming the shows could be watched in any order without causing the audience distress.

But The X-Files show is about that which is beyond the normal, so this show embraced mythos.  Above and beyond the weekly episode was a master narrative that was at first supported by the “monster of the week” device and then subsumed it.  This show became completely mythos focused towards its end as the characters were entwined within an epic conspiracy that involved covering up the truth.

The X-Files opened the flood gates for a new kind of televised serial and in 1997 Buffy the Vampire Slayer was first aired.  Buffy was the dissertation topic of my late husband Fred Holliday and he often marveled at the beautiful marriage of “monster of the week” and mythos within this program.  It also had a healthy dollop of Metanarrative with characters using lines such as “I can’t believe you, of all people, are trying to Scully me” or “Dawn’s in trouble, must be Tuesday.”  (Tuesday day was the day the program was aired.)    

Buffy aired from 1997 to 2003 and astounded critics and fans alike with its well written dialogue and its mythos that spanned 7 seasons.  During those years characters were allowed to grow and change.  Buffy went from being a high school student, to college student, to college drop-out, to food service employee, all the while spending her nights saving the world.  She was an every woman embracing all economic classes and with the death of her mother became the adoptive parent of her younger sister. Buffy died twice, only to return to deal with grief, addiction, domestic abuse in addition to the trials of leadership. Then in 2003 Buffy left the airwaves, but like The X-Files before her, she inspired other programs. 

In 2005 the BBC the creative team behind the reboot of Doctor Who would successfully pitch the return of this well loved franchise as a “Buffy” for the UK. Also in 2005 Supernatural débuted in the United States, in this program, like The X-Files, “monster of the week” was devoured by mythos.  Supernatural begins with a tale of two brothers, Sam and Dean Winchester, who define themselves as “hunters” and their goal is to find their lost Father avenge the deaths of their loved ones at the hands of a demon.  Along the path towards this goal they encounter various paranormal entities that they must overcome in order to help terrorized civilians. They are mission driven and in the cause of fighting for that which is good, they support themselves through credit card theft and card sharking. Saving the world rarely pays well.

Now the worlds of television and medicine begin to collide.

I painted this painting as I listened to episodes of Supernatural streaming on Netflix.  As I listened, I learned the protagonist Sam was attending Stanford.  He was smart, handsome and empathetic with strangers to the point of endangering his fellow hunters.  He was also somewhat elite, fussy and prone emotional outbursts when things did not go his way.  Dean, the other lead, liked heavy metal, drove a 1967 Chevy Impala, took pride in his blue collar and beer tastes.  In addition, Dean was loyal to the point of self-destruction and refused to accept the concept of fate.   

All of these thoughts swirled in my mind like the spirals in this painting, as I painted “Medicine X.”  

In this painting the tower and quad of Stanford define the piece.  The sky behind roils with inky spiraling clouds.  The time is now and healthcare in the United States is mired policy debates; while, like a beast of burden, the institutions of care limp forward toward an ever elusive goal.  In the center of the painting is an Ivory Tower.  It has entire sections sawed out and begins to resemble an electronic key.  Here is the key to saving lives.  As I am sure Dean Winchester would say to Sam, you must leave the tower to fight the monsters. So when you look at this tower, I want you to think of the silos that must open and the towers that must level so we can all communicate on common ground with provider, academic and patient. Also as Buffy could tell you there is only one Key that opens a portal between worlds.  That key is a life.

In the foreground, two girls stand within rising water.  They are patients in need of rescue from the coming flood.  One girl turns her back to the viewer and holds a smart phone in her hand.  The other girl looks out of the frame and a blue twitter bird perches upon her finger.  Though they look concerned but they are not panicked, because they have the tools of mobile health and social media to help them.

To the left of this piece, a series of people are pushing their rafts upon the rising water.  Our blocks from the tower have become rafts to navigate the deluge.  Here we have doctors, techs, academics, venders, designers and patients trying to find common ground.  Each uses the pole in their hands to move forward in the water.  As the pole crosses before their body each becomes the letter “X.”

We are the X in Medicine X.  We are the unknown part of the equation.  We are the mysterious other that has not been applied to the solution.  We are the files locked in a cabinet and dismissed as other or strange.  We are the ever arching story above and beyond the episode of care.

Currently many institutions are treating their patients like a monster of the week, destroying the one-off disease and forgetting we are a reoccurring character within in our own lives.  Data access and patient portals allows us to enter the land of mythos where a narrative lasts a lifetime.

Some of us will go farther, gentle reader.  We will journey into a world where incentives are not measured in dollars but in lives saved, where stones float and ivory towers work as keys that let people in rather than keep them out.  I look forward to seeing that place.  I know many doors lead there and I think one door will open at Medicine X  and I thank Larry Chu for designing a event that is patient inclusive.  I hope to see some of your there on September 28-30, 2012.