The Man Behind the Camera

If you are as old as I am, you remember those special days in school: the movie days.  The days the teacher would walk to the head of the class and pull a projection screen over the outdated world map.  She would roll a squeaking metal cart to the rear of the room.  We would watch in awe and amazement as her deft fingers would unreel the spool of film and place it on the carriage.  She would turn on the film projector and each dust mote would gleam in the air.  Then she would advance the film and that wondrous noise: that pleasing repetitive fftht, fftht, fftht would fill the room. 

For the next thirty minutes we would fall into the world of the documentary. 

We would learn about big cats on the Savannah, or the division of a cell or the mathematics behind the construction of large buildings.  For thirty minutes the room would cease to be a slightly musty space filled with chalk dust, but instead became a theatre.  As a child, I would smile in delight on movie days, and be so thankful that the projector worked and the film did not break.

As an adult I thank all the documentarians that have created such delight in others.   I am thankful to know a handful of such amazing people.  One of those is Matthew Listiak (@MatthewListiak on Twitter) and this is Matthew’s Jacket in the Walking Gallery:  “The Whirling Dervish.”

I have known Matthew for almost a year, and for much of that time he was represented by face consisting of only one eye with a shock of red hair behind a camera.  He was the quiet one; he scurried between cameras and applied make up before the last shot.  He would look at the world with a furrowed brow.  He would pick the best light or angle for a shot.  He was like many filmmakers I have met, but one thing sets Matthew apart.  Matthew not only cares about the subject of his films, he is actively helping make the world of medicine a better place.

Matthew works with TMIT (Texas Medical Institute of Technology) as a Senior Producer.  He is intimately involved in the creation of the various quality and safety videos on the SafetyLeaders.org website.  He is one member of team creating the patient speakers portal that will go live in December.  He was a producer of the documentary Chasing Zero: Winning the War on Healthcare Harm that aired on the Discovery Channel.  And is a producer of the upcoming Documentary in the series: Out of the Danger Zone: Winning the War on Healthcare Harm. 

And all of these things make Matthew so very special.  For I have known filmmakers in my life, and many of them sadly shake their heads when they hear a patient’s tale of woe and sorrow.  But that expression of empathy is not followed by a call to action.  They do not funnel every bit of time or talent into a campaign to ensure cessation of harm.

But Matthew does.

Here is Matthew.  His bright blue eye looks upon the viewer with such depth of caring.  His other eye is mechanical: the camera itself, and he is recording.  He will ensure change by the active creation of new media.

To the right of this painting are the Whirling Dervishes.  These women spin first in meditation.  As they spin faster and faster they begin to relate to the divine.  Writ upon their skirts are the topics that fill the world of patient centered care.  “125 Million people living in chronic illness, disability or functional limitations,” says one quote from the Aligning Forces for Quality Conference.   Others skirts are adorned with websites and twitter hashtags.  Some of the Dervishes look up as a small child would, some look straight ahead focused on their own internal conversation.  And they spin and spin becoming a sort of projector for the media that Mathew creates.

At this point I feel the fright of the child inside me.  For I see the film has twisted, and I know it soon shall break and movie day will be undone.  We will no longer learn about these amazing things if the projector breaks.  If we stay too focused on our own conversations in our own closed medical communities, if we continue to merely spin our wheels and talk in a circular fashion about patient care, we shall fail.  We must each exist as a device to propel the story forward.  And through ourselves project the light we wish to see in others.

So this is Matthews Jacket. 

And this is the website Safetyleaders.org

It is filled with amazing content and media that Matthew has helped create.  And if you watch these films you will learn more about patient care and lives will be saved.

The projector only breaks when you fail to use these films as they were intended.

Cost Benefit Analysis

Yesterday, I had the pleasure of attending several sessions at the Aligning

Forces for Quality: National Meeting in Washington, DC.   Upon arriving at The Grand Hyatt, I was greeted with the utmost welcome by Alicia Aebersold and guided to a session hosted by Mike Painter, or as I have known him on twitter for these past few years @paintMD.

The session was entitled Stakeholder Perspectives on Addressing Health Care Costs.  I set up my easel while Mike introduced the panel of Speakers: Andrew Webber (National Business Group on Health-Moderator), Kathy Hutcheson (South Central Pennsylvania Alliance), Vince Kerr (United Health Care), Karthik Shyam (AIR), and Barbara Tobias (Cincinnati Alliance).  As I was assembling my supplies the lovely Kalpana Ramiah, DrPH, MPH, Principle Project Specialist for Health Policy and research at the American Institutes for Research offered to help me in any way and proceeding to get me water for my brushes.

And so I began painting this piece “Cost Benefit Analysis.”

I started painting the lovely swooshes of color that Aligning Forces used on many of its session handouts.  I listened to Vince Kerr take us to a fictional other world where diseases affecting all newborns and valedictorians were overcome by this society’s concentrated effort.  And then he brought us back to our world with the cold fact that all income increases in the past decades were wiped out by health care costs.

So, I painted deep space and the constellation that was most apparent is symbolic of the dollar sign.  In the extreme right foreground of the painting a green planet revolves with its surface deeply scored by such monetary symbols.  Here our valedictorian rests and looks upon the viewer.  He is unwell, yet graduating. And if not for health care reform his insurance coverage would lapse upon re-entry into a jobless economy.  The valedictorian throws a babe in the air in that timeless favorite game of childhood.  The baby smiles at the viewer, blissfully unaware that without a change of course in the arc of spending, there will be no healthcare dollars left for his adult life.

I then painted that arc as a rocket spiraling ever higher.  The conversation on the panel then turned to patients and their part in this mess.  The lack of transparency in pricing and use of EOB forms that read more like hieroglyphs than billing documents was remarked upon.  Patients could compare and choose a dishwasher by quality and price but not their healthcare choices.  Vince continued on, listing inappropriate procedures and wrongly prescribed drugs that waste money and unfortunately lives as well.    

Patient awareness of true cost was considered a key element in creating future payment models.  And that means more than just being invited to the table, that means patients must know the plan in its entirety.  Otherwise, we are only a pawns within a larger game.  At this point the health care spending rocket gained a rider.  An old cowboy sits upon the rocket straddling it like a rodeo bull as he tries to understand a medical billing record with the aid of a magnifying glass.  He fails in the attempt as the rocket spirals ever onward.  Some of you might recognize this homage to another piece of work.

Dr. Strangelove anyone? 

The image of Major Kong riding a nuclear bomb to his own destruction is rather iconic in film circles.  Do you know character actor played Slim Pickens that role?  Further, did you also know that the director Stanly Kubrick only let Slim see his part of the script and Slim played the role “straight” not knowing he was in a comedy?  When Slim arrived in England to film in 1962 he was wearing a cowboy hat and western clothes and the cast and crew marveled that he had come in costume. 

They had no idea that Slim wore his western cloths as regular attire.

Slim’s character is a determined patriot who fulfills his mission regardless of many system errors and dies in the attempt, with no knowledge that he has set off a series of events that will insure a complete destruction of the world.

I could not think of no better representation of patients in the current world of healthcare.  We are often the straight players in this farce, given only enough information to launch the rocket but not to steer its course.

Finally, I heard a phase that I have come to revile.  “Patients need more skin in the game.”  So I painted a woman completely bare.  Her body has become a part of a Monopoly game as she prepares to roll the die and land on chance.  In one hand she holds the die in the other the play money from the Monopoly game.   You know the gold color bills, greens, the blues, the ones you hoard trying to win the game.  She will pay them out having no idea how much she will have to spend or how effective her treatment is within a national aggregate.

How could she possibly have more skin in the game?  She is the one laid bare upon the examination table.

After the Health Care Cost Session, I saw the luncheon plenary by ePatient Dave. DeBronkart.  It was entitled “Let Patients Help: Engaging the Ultimate Stakeholder.  As usual Dave was amazing.  His speech took the audience on a rollercoaster ride of information, facts and figures and the emotional reality of the patient experience.   I quoted his phrase within the painting: “Patient is not a third person word.”



And while listening to his tale I painted one last constellation in the sky. This was the patient.  He stands with his hospital gown gaping open, his face concerned as he offers you his hand.

He has nothing left.  His hair is gone, his clothes removed.  Yet still he offers all he has to make healthcare better.

All any of us have in the end, ourselves alone.

Can you catch Activism?

A few weeks ago, Alex Priest contacted me via email about the Benevolent Media Festival in DC.  As described on their site: “The Benevolent Media Festival is a celebration of storytelling and design for good. This first-of-its-kind, all-volunteer initiative focuses on people, organizations and projects that compel audiences to care about a cause, take action on an issue, or promote a point of view through strategic and inspiring multimedia.”

Alex introduced me to Erica Schlaikjer, one of the event organizers.  She, in turn, introduced my work to Scott Thompson.  Scott works at an NGO focusing on AIDS outreach and he thought it would be great if we could do some art to spread HIV awareness and benefit the Whitman-Walker Clinic at Logan Circle.  I mentioned my street art advocacy, I suggested I set up my easel and paint about HIV in the District.  At first we considered painting by Whitman-Walker.  But as this is a citywide problem, I realized I could paint anywhere.  But what physical location could represent the pervasive presence of HIV in DC?

Starbucks.

Don’t get me wrong; as my friend Ted Eytan can tell you, I love Starbucks.  But as we often note in our pop-culture from Shrek 2 to the new song by John Wesley Harding, Starbucks seems to be everywhere.  I could think of no better analogy than painting a Starbucks to represent the HIV Rate in DC.

And I painted this Starbucks.

It is my neighborhood Starbucks.  I have walked by this location for the past 17 years.  I have ordered many Grande Lattes there.  I have often depended on the clock above to urge me on my way to work. 

So, yesterday I set up my easel and painted this painting: “3.2%.”

In this painting, I depicted a version of the Starbucks I saw before me.  There are no faces or people in this work.  If you have seen my work before, you will understand how atypical this is.  You see I paint people.  Buildings are just props and symbols to support the patient story.   But what person wants to tell this story?  Who wants their name and face attached to the story of a possibly fatal communicable disease?

Painting this was a very eye-opening experience for me.  I paint about disease constantly.  I paint about suffering patients everyday.  This became my life mission after my husband died of kidney cancer.  I painted on this very street for three months in 2009 about our tragic family journey in the world of medicine.  The people, who stopped to talk with me during that time, embraced the subject and talked wholeheartedly about their own life experience as patients.  Most of them related very personally to a diagnosis of cancer.

Talking about HIV and AIDS in relation to art was very different.  People were less open.  Often taking a step back, literally, when I began to discuss the genus of the painting.  I was astounded.  What did they think they could catch from standing close?  Was this response a manifestation of  the  fear of HIV or of activism itself?

I paint because I care.  I want to change things.  I want to help patients lead happier and healthier lives.  The folks at the Benevolent Media Festival think the same.   Hence they promote and create great media in its many novel forms to address tough subjects in DC.   

Perhaps that is why I angered a few folks.  I was supposed to be safe.  I was supposed to only be an artist painting a pretty picture.  And instead I represented a conversation about a very dangerous disease.  As one man stated after seeing my work, “That is not art, that is propaganda.”   Really?   If he was referring to a definition of art as influencing an audience.  Well, then yes I guess it is propaganda.  For that matter so is every piece of art in existence accept a few neural choices that adorn hotel rooms.  But if he is suggesting I am lying by omission or presenting biased facts, I think he must be wrong.

Last night I presented this work to a group assembled at Artfully Chocolate at 1529 14^th Street NW.  I brought my little son Isaac with me.  We had chocolate to drink and were surrounded by loving strangers: loving strangers who came to talk about HIV.  That was a very different a reception than my actively painting on site in ward 3.

You see the people who talked pleasantly to me whilst painting knew me.  They knew me as a pre-k art teacher, they knew me as a store clerk and they knew me as a mom.  And because of that they were willing to listen to hard facts and scary data. 

This painting has a marquee that states: “Las Vegas may have the most Starbucks in the US, but DC has the highest rate of HIV.”  Above that statement is the clock I have depended on for 17 years.  That clock now says something more important than time or temp.  It says 3.2% because 3.2% of District residents over the age of 12 have HIV.  Washington DC’s HIV rate is higher than most of West Africa. 

To the left of the painting is a Twitter hashtag:  #occupyhealthcare.  And that is what I am asking all of you to do.  Stand up, paint, write or speak, but do it publically.  Tell the patient story, be it about cancer or HIV.  Occupy places or occupy art forms. 

We might frighten a few folks in the attempt, but those who know us could be changed forever by a contagion called compassion.

I Grok In Fullness

On the night of September 17^th 2011, I pulled an all-nighter in New York while painting in a silent library. My friend Manny Hernandez had asked me to join with several other artists to paint about Non Communicable Diseases during the UN Summit.

I met Manny during a Health 2.0 event over a year ago and we recited poetry about sickness and death over cups of coffee and conference snacks.  He would tell me of his advocacy in the diabetes community, and months later I would ask him to join The Walking Gallery.

He would join us in spirit but could not leave the west coast to attend our event.  A friend of mine named Pete Wright wore the jacket as a proxy on June 7^th at the KP Center. 

The Jacket was called, “Acceptance.”

This jacket is a close up and personal view of a forest.  The trees camouflage an insulin shot.  And a litany is etched upon the bark of those trees: “Initial Diagnosis: Pain, Anger Denial.”  This is followed by “Healing, Learning, and Fighting.”  Then finally we reach “Acceptance, Acceptance, Acceptance….“

It is a simple jacket design that describes an amazingly painful journey. 

So, I would paint for this poetic soul.

I began at 11: 17 pm after a full day of work running a Street Fair in DC followed by a long train ride to New York.  A friend of mine named Mary Welch Higgins, who is an artist member of The Walking Gallery, was painting and so were a few other artists.  The night wore on.  Most of the artists abandoned their canvases and went to bed.  Manny’s wife Andreina and I stayed to paint.

This painting addressed two diseases that have deeply touched my life: Cancer and Diabetes.  I lost my husband to Cancer and my father died after going blind from poorly maintained diabetes.  I am acutely aware of the stages of grief that lead to acceptance in these diseases.

So I painted this: “I Grok in Fullness.”

In this painting the background is bright and fiery,  red swirls of color spool into kidney shapes.  An eight-foot tall goddess or angel is poised as if to leapt from the canvas.  Her head is thrust back and her countenance stern as her eyes pierce the heavens.

My husband Fred dangles from her right arm.  He is as loose and flexible as a small child.  We can see beyond his gown into a spine wrecked with bone metastasis.  He has kidney cancer, or RCC (renal cell carcinoma) as they like to say in the cancer communities. 

I don’t use the term very often, for what does RCC mean to the average patient?  Perhaps it is only some letters written on my painting ladder.  I am sure RCC means a very different thing to the custodian of this building.

So, my sweet Fred dangles with his bones laid bare and he looks at you. His upside down face is filled with the acceptance preceding death, whilst his hands are bound together in hospital bracelets.

He understands that it is time to fly.

On the woman’s left arm an older man flails like a toddler who is reaching for a lost toy just as a parent sweeps him up.  But these toys are his undoing.  For this is my Father and he did not have to die so soon.  But pills and beer and diabetes do not good company make.  So as the years went by, my Father would lose his health, his sight and his life to a poorly maintained medical condition.

When it became too late and his shunt would fail, he would die alone.  When the nurse called with the news that the shunt had failed, we would not know that meant drop everything and come.  We did not know.  He was our Father, good or bad, and he should not have died alone.

On this night like so many in the past, I pulled an all-nighter with Fred.  I looked into his eyes again and I groked in fullness.

If you have read Robert Heinlein’s “Stranger in a Strange Land” you know the meaning of the phrase.  I sometimes hear it tossed about in a cavalier fashion by my tech geek friends.  But it means something so very powerful.  To grok in fullness you must embrace that which you do not understand, absorb it fully, become one with it.  And only then can you hate or love a thing. Only when you know it better than you know yourself.

Yes, I grok acceptance.

Plans

If you know me personally, you might have noticed I do not do things by half.  It does not matter if I am working with children creating art, selling toys in a toy store or making costumes for Halloween.  I brought this same intensity to my pursuit of medical advocacy.  When Fred first told me to “go after them.”  He knew exactly what he was asking for.  He called it “pulling a Regina.”  He knew I would use every tool within my reach to attain this goal, and I would never stop. 

But it is hard to maintain this intensity in all aspects of life.  Some things must be let go in the pursuit.  This year is the first year in almost a decade that I am not a pre-school teacher.  And this year is the first year in his life my younger son Isaac wore a purchased costume for Halloween.        

Halloween was quite the challenge this year due to conflicts within my speaking schedule.  A little over a month ago Chip Taylor, MD Medical Director, Oregon Health Information Technology Extension Center asked me to speak in Oregon on November 1^st at the OCHIN Learning Forum.  I looked at my calendar and saw November 1^st was available, and told him yes.  I would love to speak about patient centered care and patient engagement through access to the Electronic Health Record.  

I forgot that meant I would be traveling on October 31^st.  Halloween.

Two weeks preceding the trip to OCHIN I attended Isaac’s Fall Fair at his elementary school.  There he fell in love with a Green Lantern costume donated by another child.  It was Green Lantern in the classic comic book style.  In the past I have always made the children’s costumes.  But this year I gave in and purchased Isaac’s.  I sewed up the tears at the various seams.  Hemmed the pant legs.  I took Isaac shopping to find a Green Lantern Ring and created a new mask, as the original was long lost.  Freddie, Isaac’s older brother, still got a homemade costume of a rather obscure character named “Zero” from Code Geass. 

I then spent quite a while on the phone with a lovely lady working with OCHIN to find the last flight leaving DC on October 31^st.  I would get to trick or Treat with Isaac for one hour.   We walked down the avenue to tick or treat at all the local shops on Connecticut Avenue by the toy store Child’s Play.  Isaac had a blast in his Green Lantern costume.  He was very proud of the costume he picked out.   I was wearing a Hogwarts robe from 6 Halloween’s ago.

When we went into the toy store, my old boss Steven looked at our costumes in dismay and disappointment.  He said it did not look like what he expected from me on Halloween.   Isaac did not notice he was happily getting candy.  Soon after, I was on the bus with Isaac preparing to drop him off with my friend Miriam to Trick or Treat with her children.  On the bus, Isaac looked sadly down at his candy and said he would miss me tonight.

I felt so bad.

Once upon a time Regina would have wowed the crowd and her two sons with amazing handmade costumes.  And she would have a husband there to take pictures of us all.  And we would have eaten supper together and trick or treated as a family. 

But Daddy died, and Mommy fights against injustice and little boys sometimes have a lonely Halloween.  If there is one thing I have learned in the world of medicine, is forget about holding tight to your plans.  I learned that lesson in March of 2009.   I learned that as we sat in rooms and waited for doctors that never came and records that were never opened. 

Sometimes things do not go as planned.  

So, I boarded an Airplane at 7:30pm at Regan National on October 31^st still wearing my Wizard’s Robes.  I spoke the next morning before the folks at OCHIN.  My Presentation was called Trick or Treat, and I wove references to Halloween throughout the speech. 

I then began to paint.  I painted in two sessions in the morning.  The painting is called: “50%.”

I saw the first presentation “Integrating Mental Health into Primary Care,” delivered by Tami Hoogestraat, Psy. D., M.B.A. and Demetrio Sanchez, MSW-OHSU, Richmond Mental Health Integration Team.  I was very impressed by their slides.  An early one really caught my eye with its statistic: “50% of mental health problems are missed in primary care.”

A diagram of an integrated care model soon followed that slide.  It reminded me of a spider’s web.

In this painting the patient is divided in half just like our statistic.   Half in darkness half in light he clutches his medical home.  The medical home is colored like and reminiscent of a Monopoly house.  It is an ideal but will not work without a supported reimbursement model. 

To the left of our figure the spider web diagram of integrated care places the patient in the center.   But this no comforting circle enclosing clinical text.  Here the patient looks up staring at the viewer whilst frightened.  Practitioners that are trying to care for him surround him.  I added other threads crossing the path of the diagram to the other care agents and detriments in the man’s life, be they friends, foes or family.

There is a hope within this patient, but it is an anxious hope.

To the right side of the painting blue swirls of energy cascade upward.  A staircase follows the upward cascade.   This part of the painting was inspired by the next session “Advanced Access Management in an FQHC.”

Here patients race up a stairs trying to make their appointment time.  A mother glances nervously at her watch as she hurries her child up the stairs.  A doctor waits at the top reaching out to the registered patients with one hand.  In the other he hoists a rope that ends in a watch.  A patient in an examination robe strenuously climbs the rope.  She is not scheduled but direly needs care, and the doctor is trying to fit her in, hence the term advanced access.

In the afternoon I attended Chip Taylor, MD and Clayton Gillett’s presentation “Case Studies in Re-designing Visit Workflow for Meaningful Use.”

It is entitled: “The Faces of Meaningful Use.”

I decided to take the OCHIN logo and modify it to a Meaningful Use Sun image.  So a logo tree becomes the tree of knowledge, weighted heavily with apples.  Surrounding this tree are dots.  But these dots have become faces, just as much as data points and statistics represent real people.  These are the patients and providers creating the workflows for Meaningful Use.

Below this meaningful sun, apple cores are placed upon a mountainous terrain consisting of stacks of pointed paper.  These are the ‘core measures” of Meaningful Use.  One patient in the foreground eats an apple and adds to the creation of a new “core” measure.

The other patient in the foreground is inspired by the last session I attended: “Immunization Registry: State of Oregon” presented by Mary Beth Kurilo, MPH, MSW.  This patient happily holds up an I-pad stating: Alert HL7.  The L within the HL7 is created by shape of a vaccination shot.  He is happy because easy access to immunization records will ease the work of each harried parent, teacher and doctor all over the state and this will be done in a standard code.

At the end of the day I presented the painting before the crowd with a short explanation.  Afterwards a few people cam up to talk to me.  One was a lovely woman in a purple blouse that criticized “50%” as being rather dark in light of all the strides made toward integrating mental health in the primary setting.  I said yes, it is a little dark, but this is the patient perspective and even though strides have been made he is still very anxious.  Next Chip Taylor thanked me for the day and said he would love hang the Meaningful Use painting at OCHIN.  He also thanked me for creating a custom speech designed just for them.  I thanked him for inviting me and I responded that I always try to create each speech as a custom tailored message of patient engagement for each audience.

And that was probably the crux of my Halloween sadness this year.  I don’t tend recycle speeches just like I don’t tend to recycle costumes.  I love to create each one custom made for the recipient.   This year I did that OCHIN, and my little guy happily wore a recycled superhero costume.  He was happy in his costume and he knows why Mommy does what she does.

Trick or Treat

View more presentations from Regina Holliday

Later that evening I sat down exhausted in the Portland airport.  My flight would not leave until 11:40, but my body felt like it was around 1:00 am.   I lay my head upon my backpack and pulled out my Wizard’s robe to wrap around me thankful that I had a recycled costume with me as snuggled down for a few moments of sleep.  

Before dozing off I remembered, Today is All Saints Day.  Halloween might have been a disappointment, but for many in the Patient Safety and Patient Rights community I was doing the best possible thing on this day.  And if they were still with us I am sure they would tell me so.

Mentors

Mentors

In the spring of 1991, I was a senior year in high school.  My sister Esther and I were a very active in speech and debate.  My goal was to qualify to attend regional competition in every category of competitive speech and attend National Competition.  I very nearly reached my goal and did compete in every category prior regionals.  As a freshman and sophomore I competed in Prose and Standard Oratory, as those categories are exclusive to those years.  In the school year of 1990-1991 I competed in Original Oratory, Dramatic Interpretation, Humorous Interpretation, Domestic Extemporaneous, Foreign Extemporaneous, Monologue, Humorous Duet, Dramatic Duet and Poetry.  I also debated in the Lincoln-Douglas Style of debate.   My sister qualified as well with a lovely oratory comparing the ups and downs of life within the metaphor of a yo-yo’s path.

It was a lot of work, but I am very glad I did it.  I memorized hours of material in the attempt. I pored over newspapers and magazines to create files of support documentation for my extemporaneous speech.  I spent hours organizing data for quick access when needed.  I carried those files in heavy file boxes from tournament to tournament.  

I had no idea how such preparation would help me in the years to come.  

    

My success was somewhat amazing when one considers our family background.  Neither one of my parents had graduated high school.  We were very poor.  My parents were going through the process of divorce after years of domestic abuse.  I had no money for the multiple fine dresses one need to compete in.  Everything was set against me, but I had a special reason for succeeding. 

I had a mentor.

Jeanne DeVilliers, otherwise known as “D,” was my debate coach.  She was a wonderful woman who was there for me in so many ways.  She helped me pick out amazing material to perform.  She constantly challenged me to do better.  She would even take me shopping to get the appropriate clothes.  I remember her lessons and words to this day.  There is not a speech that I perform without feeling her supporting presence.

That spring of my senior year, I qualified in regional competition and attended the Oklahoma 1991 4a State Competition in both Original Oratory and Poetry.  After many grueling rounds in both events, I won state Champion in Poetry recitation. I had performed The First Quarrel by Alfred Lord Tennyson.  It is a heart--wrenching poem about the last harsh words between a husband and wife before the husband is lost at sea.  I was honored to win the State Championship in poetry, but the greatest event was yet to come.  Regional competitions can take you to state, but National Forensic League district competition can take you to nationals.

I was so excited to attend district competition.

Many speakers would disdain the judges at regular competitions. At simple qualifying regional events judges were often regular people: bus drivers and locals that wanted to get the twenty-dollar payment for judging for the day.  Their only instructions were the rules on the top of the ballot.  They would judge for or against based on simple things like whether you were persuasive or not.  They wouldn’t notice whether you were completely correct in your citations.  They did not realize the great error of gesturing too much in poetry or moving both feet in dramatic interpretation.  Bus drivers and locals tended to focus and performance and not rules or points or citations.  I loved them.  There were no power plays and no infighting.  They often gave me ballots with the most worthwhile instruction.  

At district competition, every judge was immensely qualified.  They were all coaches or prior students now pursing college degrees.   They were all very aware of the rules and following breakout sheets just like a basketball fan follows the brackets during March Madness.  I was so excited during the breakout postings as my name kept rising on the lists, until at last I was in final competition in two events.  I competed in both dramatic interpretation and original oratory.

Due to a failure of communication, I was judged down in both.

    

Prior to the announcement of the winners, my wonderful coach Jeanne DeVilliers took me aside.  She said, “Sweetie, I have some bad news for you.”  I looked at her in horror.  I looked at the thin translucent skin of her face, her sparse eyelashes and her carmine lips.  I really did not want to look in her understanding eyes as she told me what had happened.  I had been in two finals rounds.  Each round had three judges.  Those two sets of the three judges had not spoken to each other, but both sets had made a fatal error as far as my national competition hopes were concerned.  Both sets of very qualified judges had judged against my performance in an attempt to give more seniors the chance to attend nationals.  They had both assumed I would come in first or second in the other competition, and so accordingly, both sets of judges had judged me in third place.

  

I failed to qualify for Nationals.  I would not get to speak in Washington DC.  It might not seem like a very big deal.  But to me it seemed as though my world had crashed down around me.  For a very long time, this was the worst moment in my life.  I was a failure.  I would go to college in the fall, still thinking I was a failure.    

I would not give another speech for the next 18 years.  I would work retail, I would teach, I would be a mother, but I would not be a speaker.  Then in 2009 Fred grew sick, and I dusted off by brushes and my speaking skills. 

Once again I would find a Mentor and this mentor is named Ted Eytan.  Ted asked me to do my first speech in the world of patient advocacy.

In the fall of 2009, I delivered my first speech in the Nation’s capitol.   

Ted constantly challenged me to grow as a speaker and learn more about data rights, patient advocacy and myself.  For the past two and a half years I have depended on Ted’s guidance.  He has photographed my work and tweeted my speeches. 

On November 1^st, the Fast Forward Film Festival premiered the documentary short: 

73 Cents

The talented Jamie Crausman, Ben Crosbie and Tessa Moran created the documentary.  It focuses on the painting “73 Cents” and my first year of patient advocacy.  I could not attend myself as I was presenting in Oregon a speech about the importance of patient access to the Electronic Medical Record. 

Ted introduced the video before the crowd in Washington, DC.  I could think of no one more appropriate.  Well, it would have been nice if Mrs. Jeanne Scott nee DeVilliers could have been there too, but I am sure she was cheering us on from her home in Oklahoma.   

The Rainbow Button Initiative Puppet Show

Joy.

I want you to really think about joy.  Think of the joy of a small child playing.  Think of how that joy lights up a child’s entire face.  It seems as though they shine as brightly as the sun.  Then life passes by and often that sun sets.  We spend our adult lives searching for moments of joy.   And here and there they appear: a wedding day, the birth of a child or perhaps even in an amateur puppet show.

On the evening of September 25^th 2011, an ensemble of dedicated healthcare enthusiasts gathered on the main stage of Health 2.0.  We gathered at the same time that the Health 2.0 VIP cocktail reception was under way.  Other than our small group the venue was completely empty.  Some of the performers had weeks in which to prepare and some of them were drafted on the spot.  Several attendees from the Office of the National Coordinator of Health Information Technology thought they would be the audience, but instead became puppeteers.  We were able to film and perform the show three times.  It was wonderful.  Each time the cast offered great ideas to improve the performance.  As their arms shook with fatigue, they smiled and danced and rapped.  They were brilliant.  From my perspective on the stage over looking the row of puppeteers and voice talent, I can assure you I saw a look upon their faces like those of my pre-school students. 

Their faces shone as bright as the sun and we created a rainbow.

The puppet show came very close to not happening at all.   It was an idea that came out of a data group planning committee meeting for Health 2.0 San Francisco.  We had been discussing some elaborate data sharing concepts and agreed that many were complex and needed more explanation.  I suggested we could do a short puppet/Muppet show explaining the Rainbow Button Initiative.  After the call, I spoke more with Hamish MacDonald, co-founder of Lifetime Health Diary, and Mark Scrimshire of HealthCamp about the play.  There would be puppet roles as well as actors in the tradition of Sesame Street.  Then I had the honor of speaking to the famous Ross Martin, composer and lyricist of “Meaningful Yoose Rap.”  He agreed to do the rap.  

We were ready to roll, but in the week preceding the event, I got the dreaded email from the Health 2.0 staff.  The show schedule was running long.  We would have to cut the puppet show to less than five minutes.  As such a cut would remove most of the speaking rolls, I told Health 2.0 to pull the show from the schedule.  I shared my sadness with Mark Scrimshire.  He came up with a brilliant idea.  We could film it at Health 2.0 and post it online.  I responded that we could even enter it into the Disposable Film Festival sponsored by Practice Fusion.

We were back on. 

Several amazing folks agreed to play their roles onstage as people not puppets.    Lygeia Ricciardi, Senior Advisor for Consumer e-Health at the Office of the National Coordinator of Health Information Technology would play herself upon the stage as puppets began explaining the Rainbow Button Initiative.  Claudia Williams, Director of State Information Exchange Program at HHS, Office of the National Coordinator of Health Information Technology, would also play herself until we realized we needed a voice to play the Earth Mother/Green Button and she would quickly change rolls.  She dove into the roll and even performed a rap with no preparation.  I too would be on stage as the patient/caregiver trying to navigate these data access waters.  Mark Scrimshire, the co-founder of Health Camp Foundation, would appear onstage as the white button and would rap as well.

Each puppet had a voice actor and puppeteer, and wow, what a team each pair made! The puppeteer Andre Blackman performed the part of the doctor.

Andre is very involved in public health and is the Director of Digital Communications/New Media at the American Heart Association.  The voice talent for the doctor was Jim Hansen Vice President and Executive Director of Dossia Consortium. Erin Poetter, of the ONC was the puppeteer for the Nurse Puppet.  Sunnie Southern, founder and CEO of Viable Synergy, provided the voice for the Nurse.

The loveable dog was the voice and puppeteer work of Lon Levin, Illustrator and Designer of Levinland Studio.  Award for best eyebrow manipulation must go to Katerina Jackson-Suchkova http://www.flickr.com/photos/60284414@N05/6198652217/, marketing director of Lifetime Health Diary, as the puppeteer of the Medical Records Department Puppet!  Dan Munro, CEO of iPatient, was the voice talent that greatly augmented these amazing eyebrows.

An archetypal character puppet portrayed each Button that creates the Rainbow Button Initiative.  A Military Puppet represented the VA Blue Button.

The puppeteer was Megan Mitchell, a 15 year-old artist from Washington DC.  The Voice talent was proved via the booming voice of Matthew Browning, RN and CEO of YourNurseIsOn.com.  The Green Button was designed as an Earth Mother Puppet.  Claudia Williams proved the voice of the Green Button and her puppeteer was the hard working Erin Poetter. The last button to be portrayed by a puppet was The Red Button representing privacy.  We thought a celebrity puppet would be an understandable puppet representing a need for privacy.

Cindy Throop, Health IT research Analyst for RTI, was the puppeteer of the Celebrity/Red Button Puppet.  The celebrity puppet was even granted her own bodyguard played by Alex Fair, CEO and founder of FairCareMD. He was wonderfully intimidating in a Secret Service kind of way.  Louise Schaper the CEO of the Health Informatics Society of Australia was amazing as the voice talent of the Celebrity puppet.  Her Australian accent gave this puppet quite the celebrity flair.

Finally at the end of our little play the Ross Martin Puppet rises up and leads us in a rap.  Ross played himself via a voice recording.  The puppeteer was Damon Davis, Special Assistant to the Office of the National Coordinator of Health Information Technology.  He was incredibly into the role, moving his puppet to the beat of the rap. Ross writes about his involvement here:

The American College of Medical Informatimusicology: The Rainbow Button Initiative: A new milestone in Medical Informatimusicology history has been reached with the release of The Rainbow Button Initiative video from the Sep...

We had the honor of being filmed by Gregg Masters, CEO of Xanate Media with still photography taken by the Health 2.0 staffer.  Gregg also edited the production and posted it online.

That was all of us.  We were patients, providers, techies and employees of the government.  And we were filled with joy.  It may seem that a puppet show is a silly and simple thing, but puppets can do amazing things.  They can explain complex concepts, like reading or data sharing in health.  They can even help you say goodbye.  As we ended the session, I explained where the puppets came from.  They were a wedding gift to Fred and I from his teacher Gerald Snelson.  We had loved these puppets and I know Fred would be so glad to see them used in this new way.

For Fred was a puppeteer himself, and if you have not seen it yet.  Here is his final puppet show.