Sacred Media

I met @PraticalWisdom on twitter in the fall of 2010.  Back then twitter the feed listed the @ name clearly but not the person’s real name.  I have always been known on Twitter under the rather unimaginative name of @ReginaHolliday, but Lisa Fields chose @PracticalWisdom.  So for over a year, I pictured @PracticalWisdom as a rather down-to-earth oracle rather than a person.  She would appear in various discussions and threads always connecting folks and offering advice on a multitude of subjects.

In the fall of 2011, Lisa had dinner with another Walking Gallery Member Colin Hung.  He told her all about his Gallery experience. Then I asked Lisa to email me and consider joining the gallery herself.  Soon after she joined SpeakerLink.org and expressed to me her interest in speaking as well as helping other patient speakers perfect their power-point presentations.

In the spring of 2012, Lisa sent me her jacket and I painted, “Sacred Media.”

This painting is framed as stained glass window embedded into a stone wall.  The theme in this piece is the color blue.  If you look at my art, you will very quickly discover that I consider blue a sacred color; in part, that is because the chapel I worshiped in as a child was painted with the most peaceful blue.  But much of the blue in this painting is the blue of twitter. 

Lisa and I have much in common.  For over a decade we were both married.  My marriage ended in death hers in divorce, but after our losses we both found companionship and loving friends due to a blue bird of friendship.  Lisa also spent many years involved in pastoral care with her former husband, now she still counsels others and provides great comfort in only 140 characters.  So within this painting the twitter bird appears again and again uniting this composition. 

Another through element is the tree.  Whether this is the tree of knowledge, the tree of eternal life or the world tree, it stands proud and tall and woven within its branches is a picture narrative of the elements of Lisa’s life.

In the lower part of the painting, a young provider counsels a palliative patient in the care setting. This represents the tweet chats that Lisa often hosts or takes part in that focus on palliative and end of life care.

In the middle area of the design, a young man sits within a tree smoking a cigarette.  He represents the many individuals that Lisa helped in the addiction and mental health field as a counselor.   

Beside the young man a woman is turned from the viewer and is completing a breast exam.  Lisa is frequent participant in #BCSM (Breast Cancer Social Media) chat often connecting the voices within that community to other communities, thereby spreading their wisdom. 

At the apex of the painting, a blonde woman stands above the tree. In her hands she hold a final two blue birds.  She is completely nude, or as we say in the in the world of social media she is ‘transparent”.  She looks upon the viewer with an intense gaze, asking us to look upon ourselves and communicate clearly.   

Lisa wore this jacket in DC on June 4^th all day at HealthCampDC and at the gathering of The Walking Gallery that evening.  She was an amazing participant.  At around 7:00 pm after 11 hours focusing on healthcare and social media, a lovely photographer with the Washington Post took a picture of many us lined up in our Gallery jackets.  Lisa stands within that row with her head bowed and shoulders slumped.  She tweeted at me later her dismay, saying she now knew why her mother said ‘stand up straight’.  

I love Lisa in that picture because of her stature. 

There are many of us who have been bowed by this work.  Like the tree on Lisa’s jacket we bend, we sway, but we do not break.  And what may seem to some to be a head dropped in fatigue maybe instead by a soul communing with God. 

So Lisa in her jacket appeared in The Washington Post and became an example of sacred media once again.

If I only had a heart

When I was a very small child, I would walk three blocks with my grandfather to Rexall’s Drug.  He would walk slowly in his cowboy boots and spit chaw into the weeds beside the path. He would tell me tales of long ago.   I would scamper beside him like a puppy, my bare feet skimming the pavement as I circled around him.  We would enter Rexall’s Drug and he would buy me a soda pop in a glass bottle. I would relish the cold drink and trace my finger upon the beads of perspiration on the glass.  I would wait patiently as he joked with the shop-keep.  One day near the register, I noticed this small blue lettered chipboard sign covered with little red paper flowers.  I asked grandpa if I could have one of the flowers.  He purchased it for me and as I admired it in all of its crepe paper glory, he told me, “Someone died for that.”  I looked up at my grandfather in confusion.  He opened the door and ambled down the path with his boots clopping upon the pavement and continued.  “I was born in 1907. When I was a boy there was a war and many soldiers died.  After that war, they started making those poppies. Everyone of those poppies is a dead person.”

I twirled the pretty little flower in my hand and thought of death.

A few years later I saw the Wizard of Oz on television for the first time.  I sat amazed to watch a black and white film became a color film. I had never seen that happen before.  But I became very concerned when Dorothy entered the poppy field and went to sleep.  I was never certain Dorothy survived the field.  Part of me always wondered. Did Dorothy die at that moment?  She was so young, only a child, but I knew children die just as assuredly as young soldiers die in poppy fields.

This is a Walking Gallery jacket for Dennis Wagner, “If I only had a heart.”

Dennis Wagner is the Co-Director of the Center for Medicare and Medicaid Innovation Group (CMMI) initiative named Partnership for Patients.  I spoke to him recently and asked him if he would join The Walking Gallery and he said he would.  He thought about his jacket concept and wanted to focus on organ donation.

From 2003 to 2007 Dennis lead a national initiative called Organ Donation Breakthrough Collaborative.  This collaborative was designed to gather best practices from hospitals that had high donation rates and spread this knowledge to other hospitals in order to save lives. 

During this initiative he met a mother named Susan McVeigh Dillon. Susan’s 14-year-old son Michael was badly injured during a climbing accident.  It was determined that he would never regain brain function.  She asked the hospital about organ donation.  They were not experienced with a non-heart-beating donation and therefore informed Susan that Michael was not able to be a donor.  Prior to the 1970’s all organ donations were non-heart-beating donations.  In the 1970’s the new standard of death was brain death; the non-heart-beating donation method fell into disuse. Susan demanded her son be given a chance and though she was undergoing a great personal loss she fought for Michael’s chance to give life.  The hospital contacted the Gift of Life Donor Program and working as a team they were able to complete Michael’s donation.  Susan and Michael’s story inspired hundreds of hospital teams to create protocols to accept such donations and lead to thousands of recipients receiving needed organs.

So within this painting, the classic tin man hands his non-beating heart (a clock without hands) to the surgeon.  He wants to save another’s life even if his own is forfeit.

In the center of this painting is a very special girl.  Her name is Alexa.  Her mother is Monica Kersting. Monica supports organ donation through art and advocacy on her website Alexa's Hope.  Monica is unlike many in this space in that she advocates even though her daughter died while on the national organ donation waiting list.  Alexa was sick for many years and desperately needed a lung transplant. When she was only 14-years-old, time ran out for Alexa. So Alexa stands within this painting with her hourglass in hand and every grain of sand has fallen.  She smiles her lovely smile and her eyes sparkle.  She is gone. 


Time ran out.

Behind her is a field of poppies, they stretch as far as the eye can see.  Every one of those flowers represents someone who died.  But because of the work of people like Dennis, Susan and Monica, that death also represents lives saved.

Non-compliant

The woman looked at me and partially asked in jest, “What exactly does Ted do?” 

I am familiar with this question as I am a friend of Ted Eytan and he is not easy to quantify.  Shall I answer in the traditional way?  He is a doctor.  He works as a Director of the Permanente Federation with a focus on emerging technologies, utilization of social media channels and health information technology that supports patients and their family members in achieving an active role in their health journey.  But grasping the true concept of Ted is sort of like holding liquid mercury between one’s fingertips; for like mercury, Ted is fast and reflective.

In May of 2009, I attended a small Health 2.0 meeting in Washington, DC.  My husband was in inpatient hospice and gave me leave to spend a few hours with some amazing people who were trying to change the world of healthcare.  That day I would meet with Christine Kraft, Susannah Fox, Cindy Throop, Claudio Luis Vera, Nancy Shute, Dave deBronkart (via speaker-phone) and I would meet Ted.  Ted seemed so serene within the group. This was my first health meeting and I brought my husband’s dell laptop computer so I would seem professional.  Then I listened to presentations on ehealth.  At 3:15 I spoke and the room went silent as I recounted the horror my husband and I had faced these many weeks. Ted did what Ted does best, he listened to all I had to say then he asked a question: “What was the worst thing that happened?”

I answered, “Lack of access to my husband’s data was the worst thing.” The group then told me to focus on that.  For the past three years I have and I often have fought for patient data access with Ted at my side.  Recently I had the honor of painting Ted’s second jacket in The Walking Gallery.  This jacket would tell his story and it is entitled “Non-Compliant.”

Ted has been a member of The Walking Gallery for the past year. He has walked all over the US wearing Surgeon General Regina Benjamin’s story on his first jacket. He did an amazing job. So many people know more about our Surgeon General because this man was willing to wear the trials of another on his back.

But this jacket is Ted’s story.  Ted is one of those amazing people who question everything: the status quo, the old model and new trends. Through these questions he purifies thought and distills a million pleas for help into a coherent strategy.

Ted looks to the left when others look to the right. This skill is not without price, and Ted has paid again and again. You want know how you learn to see a problem from the outside?  You learn by being the outsider. You learn by years of darkness. You learn bravery while hiding in closets avoiding fists or taunts. You spend years standing out within a crowd, not fitting in. You learn in the lonely time of introspection that these other children see a different world.

Their faces are not finished yet.

When I was young, I loved to paint and draw old men. My friends wondered at my fascination. I said “I love to draw their beautiful pain.”  Ted has one of the most beautiful faces I have ever seen, and he had it as a child. In this painting, I stand behind Ted. My hand rests upon his shoulder. I too look to the side with a worried glance and question what is coming.  I know how it feels to see a problem from the outside.  I know the darkness that Ted has seen.  Yet we smile. Ted firmly replies to any set back, “Love always wins.”  The child in me holds the child in him. Together we are more powerful than we were alone.

We are the non-compliant ones. Do you know what compliant means? It means docile, willing, obedient, manageable and submissive to an excessive degree. Ted may be a doctor. I may be a patient. In this we are one, out and proud.  We are non-compliant. We question authority.  We question folks who say “That is just the way it is.”  We will not stop asking questions.

In April of 2011, I told Ted we should have a gallery show in the Kaiser Permanente Center for Total Health.  He responded with a twinkle in his eye that they would never let us pound a nail in these new walls.  I responded with a glimmer in my eye, “We won’t need nails we will wear the art upon our backs.”

Now 164 jackets later, I can firmly say a patient art advocacy movement was born out of a moment of shared non-compliance.

Love always wins.     

Return to Sender

I grew up in the age of the stamp.  When I was a child the post office was a grand and honorable place with marble columns and brass trimmed service windows.  As we would enter the monumental building with its magnificent foyer, I would marvel at the spacious height of the ceiling.  My footsteps would echo upon the specked marble floor and I would wait in silent awe as we stood in line to mail a package or buy a sheet of stamps.   My mother would open her coin purse and count her coins and dollars.  The mail clerk would hand her a glassine envelope filled with stamps.  I would stare at that envelope seeing the distinctive dips and swells of the gummed paper edges of the stamps contained therein.

If I were very good, when we returned home I would get to lick the stamps and place them upon the letters.  I would taste the unusual flavor that only comes from gummed paper.  Then I would proudly place those letters in the mailbox.  Sometimes I would wait upon our porch as the cicadas hummed their summer song and wait for the mailman to take the letters far away.  I would never see those stamped envelopes again.

Except once in a great while, the letters would return.  My mother’s crisp penmanship would be somewhat covered by an imposing stamped image of a hand and in red ink these words were written: “Return to Sender.”  My mother’s brow would furrow, as she would scan the message.  Had someone died?  Had someone moved?  

“Return to Sender,” it is a phrase that caused consternation then as well as now and it is the name of The Walking Gallery jacket of David Lee Scher, MD.

David is the Director at DLS Healthcare Consulting, LLC.  He focuses a great deal of his time and energy as an mhealth evangelist.  He was a cardiac electrophysiologist and is a leading authority in the medical device industry.  He lectures throughout the world about the intersection of cardiac monitoring, mobile health and digital devices.  He contacted me earlier this year because he wanted to join The Walking Gallery.

He wanted to wear upon his back the plea of many who have implantable devices inside of their bodies.  They echo the cry of e-Patient Dave: “Give me my damned data!”  Their cry is all the more poignant because the data they are asking to access is created and transmitted from inside their own bodies.

In this painting two figures stand in the background.  A woman and a man stand in a stance that mimics Clark Kent’s transition into Superman.  They rip open their shirts but do not to reveal an emblazoned “S,” instead we see an X-ray view of their hearts.  Each heart has an implanted defibrillator attached and spiraling ribbons of purple data coil above and into the cloud.  This data bypasses it users and goes directly to the manufacturer and doctor in charge of the patient’s care.  

David holds a very special letter in this painting.  The stamp is a vintage one saying, “Love” for we must enable patients who request access to such data.  We must do it because these patients are suffering emotional anguish and are unable to maintain their health to the best of their ability without such access.  Denial is causing heartbreak within hearts already broken.

The stamp cancellation on this envelope is dated 2012 and the cancellation stamp is the symbol for WiFi access, for in this day of instantaneous communication the reason that patient access is denied is not a technical one.

The mail to address offers some hints as to why the patient is denied access.  This message is being sent to the doctor’s office and the device manufacturer via a closed network server.  This is a closed network and data is a thing to be owned and sold, but not shared.

Finally the return address is the Patient on Main Street in Any Town, USA.  The return to sender marking points to this address and offers a reason for return: “Nothing About Us Without Us.”

Finally, David within the painting stares out at the viewer.  He is wearing this jacket to conference after conference.  He is throwing down the gauntlet. He is demanding patient access in the hallowed halls of exhibition floors surrounded by the manufactures of such devices.  He will not stop; he will not rest until our system changes.   “Return to Sender” will become a patient data right rather than an ephemeral remnant of paper postal system.  

The Scribe

Once only the wealthy, the scribes and the priestly class accessed the word of God.  The populace had to settle for images wrought within stained glass, carved within stone and painted upon walls to enlighten them.  Then the printing press was invented.  Then Martin Luther demanded change.  Then he translated a Latin Bible into the people’s German.  Nothing stood between the common man and the word. 

The world was thrown into turmoil.  Scribes wondered what they would do.  Priests felt their Godlike powers sway, as a questioning public read the word in their native tongue.  During this time the western world plunged into religious war due to a change in technology.

We are again at a time of great change.  The doctors of medicine long have been revered like priests of old; scribes copied their words as a holy writ that the public could not easily access.  Then came the electronic medial record.  Now patients, doctors, nurses and scribes are trying to find their way in this new world.  Each has a place in the system of care and scribes are walking a new path.

As an artist, I create lovely calligraphy whilst having very poor penmanship.  I can write fast and the longhand text appears as an insane scrawl, or I can write legibly at a glacial speed.  I have great respect for the scribes in our culture that can quickly write in a beautiful fashion.  That respect applies even as they embraced typing and technology.  They hear and type with great speed, making that which was illegible, easy to communicate.  My eldest son has autism so he often must use a scribe to get his thoughts quickly upon the page.  The word “scribing” is enmeshed in our daily life.  I have great respect for scribes and Kathy Nicholls is the best scribe I know.

This is Kathy Nicholl’s jacket: “The Scribe.”

Kathy Nicholls reached out to me in September of 2010.  She had stumbled across my blog while following Meaningful Use and HIPAA regulations.  She has worked in the medical transcription field for many years and was concerned that the patient story was being lost in the culture of ‘click the box’ electronic medical records.  She also explained she was caring for her grandmother and was very frustrated by records lost within EMR systems.

For the next year I read Kathy’s thoughtful and astute comments on the Society for Participatory Medicine list serve.  She brought such a grounded perspective to conversations that often were highly theoretic.  Then in the fall of 2011 she reached out again after seeing that I would be presenting as a keynote speaker at the AHDI (Association forHealth Documentation Integrity) conference in August 2012.   That was her professional organization and I asked her to join The Walking Gallery.  Kathy was torn as to which story she would tell.  Would she focus on caring for her grandmother or on her fight for patient-centered and accurate data access in the EMR for patient and caregiver?

Kathy sent her jacket to me and it would rest in the queue as her story twisted and turned as the care for her grandmother became more intense.  Much inspiration for this painting came from Kathy’s life experience in February 2012.  Her grandmother was hospitalized and records were not accessed.  Kathy’s grandmother had created an advance directive specifying no DNR prior to the onset of dementia.  Nevertheless, she was intubated upon admission to a local hospital and was asked to under go duplicate tests, as data was not transferring between EMR systems.

From the end of February through the first few days of March, hundreds of Kathy’s friends followed her care giving journey as she updated us on her grandmother’s slow decline.

In this vignette a doctor is checking on Kathy’s grandmother, while a young relative asks, “Why don’t you just clear her nasal passages so she can breathe?”  Active death is a concept not well known outside the halls of medicine.  The young and inexperienced in death cannot understand that fluid slowly fills their great-grandmother making it hard to breathe. 

In the background Kathy stands in her scribe’s gown.  Her hands are typing on a keyboard and holding the quill.  The paper uncoils before her saying, “This is important, this is the patient story.”  In this moment she is combining worlds; her role of scribe and caregiver become one.

Behind her the cloud and sun streaming into the room offers a promise of a new day. Only if we combine the compassion of the caring scribe, the analytical thought process of the doctor and self-reported patient data with the technological promise of the cloud will we create an EMR that truly is the patient story.  

Did You Wash Your Hands?

I don’t remember the exact day I met Marsha.  I felt as though we have always known each other.  Perhaps we met at Child’s Play the toy store or on the Murch elementary playground picking up our children.  I know I have followed her on facebook since 2010.  She is kind and loving.  She walks with an easy stride with her children at her side and a babe within her arms.  I know she is very busy juggling a career of singing and playing an instrument with the duties of a mother.

No, I do not know the moment I met Marsha, but I remember very well the day she joined our movement.  I was in the grocery store fruit isle and I told her about this idea I was hatching to create a Walking Gallery.  I asked her to join us and consider writing a song.  She could focus on hand washing, as it was so necessary to fight infections in the hospital setting.

Now, often when I tell folks about the world of healthcare and patient advocacy on playgrounds and in stores, they shake their heads sadly agreeing something must be done.  But the weeks pass and I do not hear from them again.  I am sure they mean well, but the price is too high, time is too dear and they do not make the leap from a world play-dates and sippy-cups to the world of health activism.

Marsha leapt.

This is Marsha Goodman-Wood’s jacket: “Did You Wash Your Hands?”

I painted this jacket in my hotel room days before The Walking Gallery first gathered on June 7^th 2011.  I had agreed to deliver a speech at Cerner that week and had no idea how busy I would be painting, so stuffing a few jackets into my luggage seemed a smart move.  I painted this jacket thinking of how beautifully Marsha sings to children.  She sings clearly and her voice sparkles. She never condescends, but instead sings to children at their level and her large smile is reflected on the faces of all who hear her.

In this painting a small child looks in awe at the water before her.  Her hands are frozen in the air, bar of soap in hand as she stares at a little person in the flowing water stream.  The small figure stares at the child as if to say, “Did you wash your hands?”  Small children do this task with such joy.  They rush out of washrooms arms held high saying,  “Smell my fingers!  Look how clean I am!”  Then they smile and run away, to other joyous tasks. 

As adults we lose that joy.  Water is just there beneath us, a quick splash, a squirt of soap, a quick rinse and on we go to put out another fire or endure another hour on the job.  I wonder what happened.  Did we get too tall to appreciate the wonder of the lifesaving flow of pure clean water?  Would we appreciate it more if it poured before our very eyes like in this image of a child? Would we too experience awe if our arms we raised in supplication of the cleansing flow?

Unlike the other 163 jackets in The Walking Gallery this one has an accompanying song.  Marsha wrote “Nobody Likes Viruses and Germs.” She placed it on her most recent album “Gravity Vacation.”  She sings a song designed to limit patient harm at children’s birthday parties and school fairs.

So many people in healthcare sigh in frustration and wonder what can be dome to reduce readmissions and lower hospital acquired infections.  I want sing out in response: “Look at Marsha she is doing it!”  She is playing her guitar and singing what we should do.  She is telling children and their parents.  She is making safety messaging joyful and fun.  She has taken her talents and abilities and applied them to healthcare.

Look at beautiful Marsha signing and changing the world!  And imagine how fast healthcare would change if every one of us would use our talents and abilities and apply them to preventing healthcare harm.  Imagine that world.

Dance With Us

I must admit, I met her on twitter and thought she was named for a bird.  My dyslectic mind inserted an “R” where there was naught, and @healthcarewen became @healthcarewren.  I thought I saw her fly as a diminutive creature across the channels of social media from hashtag to hashtag from conference to conference.  I wondered how she stayed so in touch on twitter as I soon found out @Healthcarewen was Wen Dombrowski, MD a physician focused on joy within elder care.

After meeting her in person at HIMSS12, I realized my initial vision of her was not far off the mark.  Wen is slight and when I hugged her I could feel her fragile bones.  Her thoughts flew high at HIMSS12 and she was often re-tweeted at that event.  Do you know the simple wren is often called the king of the birds?  In a tale that was told in ancient times, all the birds had a contest to see who could fly the highest.  The magnificent eagle outpaced all those below.  As he reached the height of his endurance and prepared to turn back, a little wren burst forth from his plumage and soared above to the highest height.  It was such a smart and clever little wren.

Wen uses a similar strategy to engage deeply within healthcare social media.  She attends every public health event she can; when an event is private and costly she tries for scholarship or entry as a blogger.  Any conference that turns down Wen does so to their detriment, for her voice is great and mighty in this space.  Sometimes when Wen cannot attend in person, she still makes her presence known by tweeting based on comments and providing a more astute summation than those who actually attended the conference.

Wrens are famous not only for their kingly status, but the complicated lyrical melodies they sing.  I am so glad Wen has joined us in the Walking Gallery for Wen does all her amazing outreach within social media, while asking only one thing in return: dance with us.  You see Wen works constantly with senior populations and she sees the joy that music and dance bring into their life.  This is Wen Dombrowski’s Jacket: “Dance with Us.”

In this painting two patients dance with Wen.  The patients are woman in their golden years, and for them that phrase is not a euphemism for the aged.  Both women relish in the dance, thinking not of wrinkled flesh and rocking chairs.  Instead, the rhythm guides them, their eyes and minds sparkle with light. They will dance as long as they can, and when balance fails and they can dance no longer, the music will still excite and they will hum and sway in their joy of the song.

I recently had the honor of hearing a presentation on dementia at my local hospice.  The speaker Mary McDonald, MD was amazing.  She explained our declining years in relation to the beginning.  Life is lived in reverse; milestones once reached now topple down in a domino cascade of loss.  We cannot dance, we cannot stand, we cannot eat solids; and so it goes until we near an end that mimics the beginning.

When we are born we must breathe, suck and swallow.  We must have these skills to live.  These purely functional skills are accompanied by something else.  Within moments of being born we are embraced.  Our parent’s arms encircle us as they hum and sing a lullaby.

We enter this world surrounded by joyful song and music. Thanks to doctors like Wen we will enjoy our golden years surrounded by music. 

ACES

You may think Matthew Holt is just some eccentric chap who fell into the world of health information technology and thought he would try it on for size.  Some may look at his raised questioning eyebrow, listen to his rather caustic statements and think that Matthew is just dabbling in this space until something else catches his fancy.

They would be wrong. 

Matthew hides so much behind a clever jest or turn of phrase. I have watched those blue eyes fill with worry rather than mirth.  Matthew cares very much about the future of health, and not just the sparkly tech- ‘I have an app for that’ side of health.  He makes a point of inviting patients to his Health 2.0 events.

I asked Matthew to join The Walking Gallery many times, but he always redirected explaining he did not own a jacket.  I continued to pester him, until he finally admitted,  “Well, I do own that one jacket, but it is red satin.  Will that work?”  I said yes, rather emphatically and then asked for his story.  Then Mathew told me he wanted to tell someone else’s story. 

Matthew and his family are financially secure; they could take their baby to any pediatrician in the San Francisco bay area.  But they go to the Bayview Child Health Center. They go to the poverty clinic and their child is seen by doctor Nadine Burke.  She is changing the practice of medicine one child at a time.

This is Matthew Holt’s Jacket “ACES.”

Life is a gamble they say.  Some win and some lose, but those that have the deck stacked against them are much more likely to lose.  Imagine we are are all playing poker, aces are high and it is five card hand.  The player holding 4 of a kind in aces plus the kicker (that random extra card), is very likely to win the hand.  In this jacket vinette I worry for the winning four of a kind. 

In this painting, children are arrayed around Dr. Nadine Burke.  Four of the children show playing cards in their hands; each child holds an ace.  The children look worriedly at their parents and the doctor as the she advises one parent.  These children combined with the parents represent the ACES: Adverse Childhood Experience Study.  This study was a joint research project between Kaiser Permanente and the CDC conducted between 1995-1997.  The baseline participants are still being tracked today.

The results of this study were astounding.  

Participants were asked if they had experienced adverse childhood events in their households. To the far left a man looks up as he prepares to ingest an anti-depressant medication. "Was a member of the family mentally ill or depressed?"

Beside this figure a large muscular man in an orange uniform and wearing handcuffs stares out at the viewer. “Was a family member imprisoned?”

Beside this man and to his right a woman with a bandaged arm and bruised eye is speaking with Nadine. “Was your mother treated violently?”

In front of the abused mother, another woman has collapsed upon the floor with a bottle of beer in hand. “Was a family member an alcoholic or drug user?”

Finally a tombstone completes the scene, “Was a parent absent due to separation, divorce or death?”

Participants who answered yes to four or more of these questions were at substantially higher risk for premature death and chronic health problems.  The research determined that children did not have to be subjected to direct physical abuse to suffer adverse effects in their health.  Just being in this hostile environment had a cumulative and toxic effect on the child’s DNA.  Of those studied with a four ACE’s it was found they were 260% more likely to suffer chronic pulmonary obstructive disease compared to a child with 0 ACE’s. 

So Nadine is incorporating this study into her care design.  She is treating each child with the knowledge that they are predisposed to suffer certain health conditions.  I sincerely hope those technology firms designing electronic health records learn from her work.  The electronic health record cannot be an episodic receipt of care; instead it must provide a view of a life in its entirety.  What happened yesterday has great impact upon today.

As an adult reading this study, I know I must communicate more with my doctor, as I am one of those lucky ones.  I hold four of a kind in this game.  When my youngest son Isaac saw the picture he wanted to be included. I did not want to do that. But he’s the kicker, for no matter how hard I tried to have him live a childhood better than my own, his father has died.

So Isaac holds hugs the tombstone. I know in this way the deck is stacked against him.

Trisha's Calling

In the week before the gallery gathered in Washington, DC on June 4, 2012, we walked online.  A suggestion bubbled up on the twitter feed that walkers change his or her avatar to their jacket image.  It was a great idea, as many of those who live far away cannot make it to the physical gathering.   I was a beautiful thing to watch then twitter screen fill with icon art as the gallery neared.  So many pictures, in so little space scrolled before my eyes during that time.  One avatar stood out in particular.  That was Trisha Torrey’s image; she left the world of the functional icon behind and entered the world of the sacred.   She laughed at me when I said her picture looked holy.  After all, I had painted the image; I knew exactly what it looked like.  Except, I did not know. You see, Trisha cropped off the red boarder of her jacket when she posted the image.  That changed the tones of the blues within the piece, and their intensity was less without the reflected glory of the red. Those blues had become silver and her jacket had become an Icon.

This is Trisha Torrey’s Jacket: “Every Patient’s Advocate.” 

This was the second time I painted Trisha and I doubt it will be the last.  She first appeared in all of her cheery goodness in the painting “Give Us Our DamnedData.”  She is an unusual member of the justice league of patient advocates.  Like many in this space she joined us due to a medical error.  But her case is rather unusual.  She did not have cancer.  She was misdiagnosed with a very aggressive and deadly form of cancer and urged to begin a toxic treatment immediately.  Trisha sought a second opinion of another oncologist because she felt fine and trusted her body more than the orders she had being given.  She got a copy of her lab results and the questions began to pile up as she researched the terms and words included in the report. 

Prior to her appointment with the new doctor, she was pretty sure she did not have cancer. The new doctor confirmed it.  Now this is the place in the story many folks would walk away.  Perhaps this would become fodder for future conversations during book club or a great comment to post online in response to a cancer article.

Trisha took this experience and changed her life.  She created a bridge from her old life to a new one of advocacy.  She cannot forget that moment when she was told she had a fatal disease.  She cannot get back those weeks of worry she suffered.

Have you ever held your breath while crossing a bridge?  It is a game that many children play.  It is really fun game until the day you reach a long bridge. That day it stops being fun.  It stops being fun when your vision darkens a bit around the edges and that panicked gasp bursts forward from deep inside.  At this point a child might giggle, forgetting the terror of one moment before.  But Trisha does not forget the terror of that moment she could not breathe.

So Trisha writes and Trisha speaks.  Trisha questions many things and does so in a way that is not off-putting, yet is very much filled with authority.  In this painting she is the cloud and she is the embracing bridge.  Trisha connects people and she uses the tools of online advocacy to make this connections.  She does it through her writing at Every Patient’s Advocate and her patient and caregiver resource the AdvoConnection.   Within this image she is bringing people together, both providers and patients meeting in the middle.   

Above this vignette is Trisha’s face: sacred and serene doing what she must.  Living her mission to advocate for others, for that is Trisha’s calling. 

Upside Down and Backwards

Each year as the anniversary of my husband Fred’s death approaches, I am preparing to teach Vacation Bible School.  I taught the art at VBS for many years before Fred’s death and now for years after.  It always is an honor.  The hardest year I taught was when we had just buried Fred.  It was a few days after seeing Fred die, that I stood before a room of bright faces and taught them about the love of God. 

Sometimes the lessons are hard ones. 

Sometimes the lessons I teach do not mesh well with a young child’s concept of what is fair.  I know the parable of the last minute laborers in the vineyard was a hard one for a lot of my students.  Do you know that tale?  Jesus spoke of a landowner at harvest who hired some laborers at the beginning of a day and they toiled all morning.  The job was large, so at midday the landowner hired more, and then again at mid-afternoon.  Finally when the day’s work was almost over, he hired any laborers yet remaining to work within his field.  At the end of the day he paid all the same coin: the accepted amount for a day’s labor.  Some of the morning crew grumbled that it wasn’t fair, they had worked longer had should be paid more.  To this complaint the landowner responded he had paid the agreed upon wage to all.  Jesus concluded the parable with a powerful phrase,  “The last shall be first, and the first shall be last.”

That is a good phrase to keep in mind when we consider The Walking Gallery.  I do not paint the jackets in the order in which they arrive.  I paint them in the order that they should be painted.  I do not own the gallery; it owns me.  Sometimes I see with crystal vision the image that should be painted upon a jacket that just arrived that day, while other worthy jackets linger in the queue.  No, it is not fair. 

I guess by that standard an ER is not fair.  Patients are not processed in a straight chronological order, they are triaged.  Sometimes the last shall be first, and the first shall be last.

This is Michelle Litchman’s Jacket: “Upside Down and Backwards.” It arrived express mail and left via express mail and should arrive in time for Michelle to speak in at the American Academy of Nurse Practitioners Conference. 

In this painting we see a cheery gingham tablecloth.  Upon that cloth is a spoon.  Within the concave depths of the spoon, we see a reflected face.  This is Michelle’s mother who is an immigrant Vietnam.  She lost her hearing at the age of two.  Each time she goes to the doctor she needs a sign interpreter to fully understand.  Often she has been left without an interpreter as facilities say it is not feasible and is a financial burden to provide this needed accommodation.  Often staff will try to letter sign alone.  Can you imagine as a hearing individual the cognitive processing frustration of someone speaking letters to you one letter at a time during a medical encounter?  A system of care must first and foremost communicate well with patients, anything less than that is antithetical to good care design.  It is upside down and backwards.

But Michelle's frustration does not solely revolve around her mother’s care.  Michelle is a nurse practitioner who specializes in diabetes care.  She has heard far too many patients vent their frustrations at a system that left them with no preparation on how to live with diabetes.  Diabetes is far more than just “watch your sugar.”  Diabetes is a complex disease and all of the elements of care cannot be discussed in a fifteen-minute appointment. 

So within Michelle’s jacket glittering sugar is spilt upon the tabletop. It is literally glittering, as I added glitter to the white paint on this painting.  I bet some folks will stare mesmerized by the sparkle as Michelle stands before them.  They will stare and they will wonder.  What does this painting mean?  What is it trying to say? 

I wonder if they will get a chance to ask her, or like so many patients with diabetes or like Michelle’s mother, will they leave with their questions unanswered? Left filled with a nagging frustration and wishing that had been able to learn more.

Tiffany and Lupus

When I was 20 years old I spent the summer with my mother in the house I lived in as a child.  I had only been away for less than a year.  It had been a very hard year.  I felt very alone. I was not doing very well in college.  I was falling. I was failing.  I went home to my mother’s embrace.

But I am unable to sit still for long. 

Soon I was volunteering for the local community theatre.  I only had one year of college but that was deemed sufficient training to be in charge of costume design and stage construction for the production Oliver.  Every spare moment I was building costumes or building sets on the local high school stage.  I scheduled a work call to build the set and only person showed up to help.  Fortunately he was a contractor, so we got quite a bit done.  The next day I began hauling 50 lb drums of drywall mud to the set, when I felt my back go out.  Once I could breathe through the pain I went to the office and called my Mom.  She came in her car to get me. I could barely walk.  Going to the doctor was out of the question since we had no insurance, so she placed me on her bed to rest with an ice pack on my back.  She rolled me over as needed, because I could not do that myself.

I lay within the room upon the softest white sheets.  In the center of the sheet my mother had embroidered a peacock in a sacred tone of blue.  I would run my hands over the hundreds of French knots that marked the plumage. An occasional gentle breeze would blow in from the open window and the window sheers would billow like the wings of angel.  My mother cared for me.

Soon the show's director called wanting me to come in to work on the set.  Now, my Mother is the sweetest, kindest person you could ever meet.  I had never seen her raise her voice outside the family.  But that night she yelled on the phone at the director of the show, and I smiled.  I knew my mother had my back, even if I had broken it.

Perhaps this story is the reason I loved Tiffany Peterson since the moment I met her.  She is an amazing advocate in the Lupus community and she orchestrates great deeds from far away, often while laying in a bed in pain. 

Tiffany is an older child in a large family.  For many years her mother depended on her help with the younger children.   Then one day Tiffany was sick.  For quite a long time no one knew what was wrong with Tiffany.  She moved down from her upstairs room because climbing became too much for her.  She was placed near her mother who became her caregiver.

This is Tiffany’s jacket: Tiffany and Lupus. 

I painted this in New York at Social Media Week NYC in February 2012.  I painted this at the easel while Tiffany told me her tale and a crowd swirled around us.  The strangers laughed and spoke with a slightly maniacal tone that accompanies the second glass of wine.  Occasionally, someone would jostle my easel or make a witty remark about live painting at a cocktail party. 

But within the spiraling conversations, there was a pool of stillness where Tiffany and I stood.  For beautiful, quiet Tiffany was pouring out her heart and I was wetting my brush in her soul.

In this painting Tiffany lies within a darkened room.  In the far background her father is represented only as a silhouette.  He is leaving her.  He does not believe her pain, after all she doesn’t look sick.



In the foreground Tiffany rests on purple sheets, the color of Lupus.  Her mother holds her as she holds her mother.  The love between them is palpable.




In Tiffany’s hand she holds her laptop.  It is her window to the wider world.  It represents all of her online friends who support her in her disease and on her journey.

Tiffany is beautiful, brilliant and she has so much to look forward to.  She has such a powerful voice online and in person.  But she suffers still.  She gets tired.  She watches what she eats.  She wears a hat in the sun.  No matter what she does to stop it, the disease can still assail her.   Tiffany does all she does while in pain.  When all of the other advocates have gone to sleep; it is just Tiffany staring at the blinking cursor.  Just Tiffany and Lupus.

#OccupyHealthcare

Tuesday September 20, 2011 I met Ben Miller at the annual AHRQ meeting near Washington, DC.  You might know him as @Miller7 on twitter and his social media voice is loud and powerful. I have followed his wisdom for years, but on September 20th I had a chance to meet him in person.  He is a kinetic flame caught within a human form.  His slight body moves through the crowd like raindrops on a windowpane.  He is quick, unpredictable and oh, so very graceful.

He was wearing a three-piece suit and I offered to paint his jacket then and there.  He cocked his head to the side and smiled with an impish grin replying, “My wife would kill me if you did that.  This is my good suit.”  Not wishing to create martial discord I offered to paint another suit as soon as he could send one.  Then Ben invited me to attend his Mental Health Town Hall meeting the next day and I would paint the session.

I came to Ben’s session with my French Box Easel in hand prepared to weave through crowds in order to set up in the back of the room.  I was dismayed to arrive and find a room designed to seat 300 with about 50 attendees.  The room next door with its presentation about Partnership for Patients was filled to capacity.  Was there so much stigma attached to mental health that even attending our session was verboten?  I furiously began to paint. 

I painted the jacket The Stream during that session.  I spoke to Ben afterwards saying I would like to help him in anyway I could, and especially would like to spread the word on what he was trying to accomplish in the world of mental health and patient access to data and health records.  

Not long after he contacted me about his new twitter initiative and blog: #OccupyHealthcare inspired in part by the #Occupy movement on Wall Street.   Quite a few outspoken patients and providers had been saying some rather revolutionary things for quite a while now.  We would tag them #hcsm or #ptsafety, but now we had a new tag #OccupyHealthcare.  Ben created a site that would gather our words and magnify them and in the months hence he has taken on a lot of issues.

So this is Ben’s jacket: #OccupyHealthcare.  In this painting the ivory tower is personified.  Three careers stand tall before us.  A primary care doctor, a surgeon and an academic loom large within the composition.  They barely see the little people arrayed before them.  Their eyes seem disconnected and distracted; the surgeon cannot even stop from checking her smartphone in this moment.  Her eyes dart to the side as the small crowd forms beneath her.

The crowd consists of patients and providers waving banners that say things like: “ #Occupy Healthcare” and “Join Us!” with a twitter bird emblazoned on the sign.  All those in the crowd face the monolithic ones and we cannot see their faces.  But even with this limited ability to read intent, the viewer can see that is crowd is not angry.  This is a crowd of collaboration.  These arms are raised in welcome, not attack.  They are occupying the space.  They may be small and slight but they are many.  If you think small and slight cannot wreak havoc on old forms, ask any homeowner their feelings on termites.

Nature is designed in such a way that which is old and dead will be recycled into something new.  This can happen gradually through rot, mold and small creatures working diligently to deconstruct.  Or destruction can come in a wildfire of change, but even then nothing is wasted.  Cinders make great fertilizer and they are a key element in cinder blocks.

I am so happy Ben joined the gallery.  He is one of 148 Walkers that scurry to and fro from medical conference to medical conference.   At HDI in Washington DC on June 5-6, 2012, quite a few people were amazed how many jackets were at the conference.  One attendee said, “I used to only see a couple of these jacket paintings at a conference, and now they are everywhere I look.”

You see we paint on business jackets for a reason, they a type of Trojan horse.  A walker is invited to a conference.  He or she looks normal from the front.  They are allowed in and only then does it become apparent that the patient is in the room and the dialog must now change.

The Walking Gallery is a very simple concept; we are occupying Healthcare.

The Sacred Duty of a Mommy Blogger

This February when I attended Toy Fair in New York, I attended as a blogger for Child’s Play.  Toy Fair is an absolutely huge exhibition and sales conference.  For many years I attended as the art buyer from one of the best toy stores in the nation.   When I walked into a booth I was treated with a great deal of respect due to my buyer’s tag.  When the booth staff saw my store name and location, many an exhibitor would jump to their feet and grab an order pad.  They expected me to be fully knowledgeable about products and did not waste one second of my time.

I found I was treated very differently as a blogger.  Some booths were courteous, but many had me wait to one side as they found the press liaison or marketing director.  I often was walked through a both while the sales person rapidly recited ad copy scripts promoting the newest toys in the line.  Finally, after hearing a few too many trite phrases, I would interrupt with a pointed technical question. Thereby informing the sales person I knew quite a bit about their product line.

One woman even turned to me in surprise saying, “Wow, you know your stuff!  I was assuming you were just a mommy blogger.”

Just a mommy blogger. I find mommies are rarely just anything.  They are homemakers, caregivers, artists, teachers, lawyers, shop-keeps and doctors.  One of the greatest mommy bloggers I have ever known is Wendy Sue Swanson.

 

I met Wendy on Twitter as @SeattleMamaDoc.  She always tweeted astute comments about clinical care and social media.  Soon after Toy Fair I asked her to join The Walking Gallery.

This is her Jacket: “The Sacred Duty of a Mommy Blogger.”

In this painting a contemplative Wendy stares at the pencil in her hand.  She is preparing to write. She holds her duty as a sacred one.  The pencil itself is placed well within the foreground of the painting and seems as large as a totem pole, for that is exactly what it is. 

At the top of this totem pencil is Wendy’s doctor from her childhood.  He is two-faced within the carving.  One side of his face seem loving the other side is malevolent.   As a child Wendy suffered from a minor condition that required many injections and expensive long-term therapy.  She trusted and liked her doctor a great deal over the years of her treatment.  She finally did get better and suffered no side effects from the treatment. 

Fast forward a few years later to college, the FBI interviewed Wendy about her old doctor.  Apparently he had lost his license for fraud and he was laundering money. Soon, Wendy completed her degree to teach math and science to 6^th- 9^th graders.  She enjoyed teaching but realized her heart was aching for a different life path.  She decided to go to medical school.

She finished her medical school degree while dealing with personal health issues.  She received a master’s degree in bioethics.  She focused her research on the effect of media on the dyad of the patient-doctor relationship.  While in her residency she helped very sick children.  She saw first hand love and joy, hope and loss. By the end of her training she had a new reason to be joyful: she was pregnant with her son.

Wendy became a community pediatrician right after training.  All of her years of study had prepared her for much of her new career, but the best teacher was her small son.  She now practiced medicine as a Mommy Doctor.  The old way she looked at the world had fallen aside and now she saw life through a prism.  The light of knowledge would pass through her and form a rainbow of understanding.

But once you see as Wendy does, being a local doctor is not enough.  There are so many people who need help.  So Wendy tweets, Wendy writes, Wendy spends night and day working on ways to revolutionize healthcare.  She wants to see a world where patient and doctor communication improves.  She hopes to find a space or build one where doctors and patients are happy and fulfilled. 

I think she will do it.  After all, she is a Mommy Blogger.

Custom-Tailored Meaningful Use

Almost one year ago Paulo Machado called me on the phone.  I had been following him on twitter for a while, but he had recently seen Matthew Browning wearing a Walking Gallery jacket and he wanted to talk with me.  He called me up and we talked for a bout an hour about the Walking Gallery and my mission as a patient activist and finally he stopped our somewhat circular conversation with a statement.  

“Okay I have you figured out.  You are doing all of this because it is the right thing to do.  You are a do-gooder.”

I said, “Yes.”

He said, “Fine, I will tell you my story.”  About two weeks later we found ourselves at the same event in Philadelphia July 13-14, 2011 at the Regional ONC Meeting. I would paint four jackets in two days and Paulo’s would be the fourth.  He took it off his back and it was a very special jacket.

This is Paulo’s jacket “Custom-Tailored Meaningful Use.”

This jacket was one of the last jackets made for him by his father.   Paulo’s father Armindo became a tailor when he was only a preteen.  He was a master tailor as an adult.  He was amazing and could make any garment.  He immigrated to America in 1969, first working in the textile mills in Philadelphia.  When the mills closed he opened his own tailor’s shop in South Philly.

Paulo worked in the shop as a boy; he would cut and press.  As he grew older he would run the register and handle sales and generally help his father.  When Armindo was in his early forties he began to see his doctor because of some problems he was having.  For the next ten years he would be misdiagnosed with hemorrhoids.

Finally it was determined that he had colorectal cancer and he needed emergency surgery.  Neither he nor his second wife wanted to make waves or question treatment options.  Armindo had a deep respect for doctors that verged on awe as well as having a language barrier that affected his care regiment.  He continued to feel poorly and suffer pain in the following months.

He died at the age of 52.

If you look at Paulo’s jacket you will see his father.  Armindo is wearing the gown and slippers of a patient as his sits at his sewing machine.  Behind him is a pin up board of patterns for a suit entitled Custom-Tailored Meaningful Use.  The parts are labeled ONC, RHIO, ONC, CMS and Beacon.  But Armindo has no fabric beneath his needle as he has been given little tools to help craft legislation. 

His sewing machine has been placed squarely on a golden path that leads to a key.  Along the path are the tombstones of the dead.  These are the ones who have fallen as we wait for better communication and timely access to our records. 

Above the sky is filled with eyes.  These are the eyes in HIT.  They are watching this vignette unfold.  They can learn from this and change the outcome for others. 

Paulo believes care must be personalized clinically, and health policy must be personalized as well.  It must be custom-tailored to the need of the patient.  Technology can make this a reality.  A ready to wear one-size fits all approach will help no one and will chafe over the years.

For the past year Paulo has worn his jacket so many times.  He wears this jacket and people ask questions and listen to his answers.  He spreads the joy of his father’s life in the jacket his father so carefully crafted these many years ago. 

Everywhere Paulo goes he is held in a custom-fitted embrace and I am honored to be part of that.