Gown of Tears

"A process cannot be understood by stopping it. Understanding must move with the flow of the process, must join it and flow with it."

Dune ~ The First Law of Mentat, quoted by Paul Atreides to Reverend Mother Gaius Helen Mohiam

The man spoke to me with a smile and a quizzical look, “Were you really crying up there on stage?”  I assured him I was crying during my speech.  He just laughed and I looked over at Amy Edgar.  A knowing look passed between us.  He doesn’t understand.  He doesn’t understand the pain; nor the tears of pain remembered.   But Amy does.

I met Amy Edgar in Vancouver at Collaborating Across Borders IV conference.  She lives in Pennsylvania and works at Cedar Crest College.  She is an assistant professor of nursing. I am sure there are many stories she could tell from the world of nursing, but this painting is about her daughter.

This is “Gown of Tears” the painted story of Sara.

I ask you to look in the face of this girl.  I ask you to see the hurt in her eyes, the deeply broken trust. 

On December 31, 2006 ten year old Sara fell.  It was a small thing, she was soaring over her sister as children are wont to do.  She hit the edge of a hardwood stair and screamed in shrill animal pain.  Amy rushed to her and checked for breaks.  It looked like it would be a very bad bone bruise.  Amy gave her ibuprofen and iced the injury as an ER trip on a holiday is to be avoided, but after a day in anguish they left to get an x-ray.  There wasn’t a fracture so they were sent home again with Sarah in excruciating pain.

Amy scheduled an ortho follow-up.  An MRI determined a hairline fracture. Percocet was ordered to combat Sarah’s pain.  When that did not work Vicodin was ordered.  Then Valium and Vicoprophin were added to treat the pain of this 68-pound girl.

Next the pain began in earnest.  It radiated down Sara’s leg, the slightest touch would cause scream of utter agony.  Amy began to look for anything that might help her daughter. 

For the first time in her life Amy would hear the term “Reflexive Sympathetic Dystrophy” or RSD (it is also called Complex Regional Pain Syndrome).  This disorder causes a central nervous system closed loop consisting of a pain pathway that never stops firing.  Amy found out that statistics give patients a 10% chance of healing without pain.  Amy read that up to 75% of children with RSD attempt suicide.

For weeks Sara lived in a litany of pain barely contained by strong narcotics.  Then the true hell of physical therapy began.

Here, I begin to cry with Amy for I know that hateful dance. In my mind’s eye I see my late husband Fred, suffering in pain as cancer ate him from inside, being told to work through the pain and just take a step. 

So Sara danced the dance, and Sara screamed.

She screamed so long and so loud that they were asked to leave by the therapist.  At the next session Amy was accused of babying her daughter.  Sara’s pain now radiated from her toes to the top of her thigh.  Her skin mottled she would scream herself hoarse during treatment.

The family was sent to another treatment facility.  They hoped for treatment and respite from the pain.  They were only to hear a careless doctor through the flimsy wall say, “ Oh Great RSD… what do they want ME to do? Fix it?” His recommendation was more physical therapy.

Amy began to despair. Now the accusations began.  The doctor accused Sara of making this up to get attention.  Amy had never felt so betrayed by her profession. 

The family went home in defeat.  Sara’s little sister began having nightmares.  Sara stopped eating.  Sara stopped smiling.   She had not used her leg in six months.

Amy began searching the internet for centers of excellence in treatment of RSD.  She found Cincinnati Children’s Hospital.   They family arrived numb and prepared for another failure, but the team atmosphere amazed them.   Sara was assured that therapy would only begin when the pain was under control.  Sara was given an in-dwelling epidural and three weeks of intense therapy.  The family was fracturing under the stress of missed work and school.

At the end of week four Sara left on her own two feet.   They were saved.

But Amy works in health care. Each week she sees people and their pain dismissed.  She sees wives and mothers pushed aside and labeled non-compliant or little Miss A-type personality. 

Well, Amy is doing something about it.  She has joined the Walking Gallery and she will wear “Gown of Tears” in the hallowed halls of medicine. 

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.     

Steampunk Health

What is Steampunk? 

If you do not count sci-fi geeks and cosplay fans among your very best friends, you may not know about this literary/fashion sub-genre.  The steampunk aesthetic arouse from science fiction novels of the late1980’s to early 1990’s.  A hallmark of the form is an intermixing of Victorian era technology with a futuristic world.  In the world of steampunk, giant floating airships replace airplanes and robots powered by steam can be wound up like clocks.  That explains the steam part of the moniker.  But along with the futuristic Victorian technology, there is grimy coal-stack poverty within the form.  In steam punk fashion, the make do, miss-match dichotomy of distressed smart phones with clock work gears gives one a sense of unease.  There is something really wrong with the picture when antiquated forms are indiscriminately matched with modern technology, hence the term is steampunk.

What is Steampunk Health? 

Well, that is the title of Ben Merrion’s Walking Gallery Jacket and anyone who looks around the world of health today will see futuristic technology surrounded by anachronistic systems of old-fashioned medicine. Ben Merrion is the Literacy Outreach Specialist for DC Public Library.  He has extensive experience as a teacher of adult learners and very involved in social justice in DC.  He is even one of the artist members of The Walking gallery having painted the sumi-e style “Holistic Medicine” for Christian Liu.

But this is Ben’s jacket and he wanted to focus on adult literacy and steampunk Daleks.  Now some of you might wonder what health advocacy has in common with adult literacy or steampunk Daleks.  Well as e-Patient Dave de Bronkart recently tweeted, I am good at pointing out connections and will show you the way.

In this painting, Ben Merrion is dressed in a steampunk fashion.  He wears glasses that are affixed with mechanical trifocals.  With a concerned countenance, he holds out his hand containing a jar of prescription medicine.  The label can be clearly read… if you can read.  It states: “1 in 5 District residents can’t read this.”  That is a pretty powerful statistic if you apply it to health literacy.  How can a patient be medically complaint, if they cannot read their care instructions or warnings about possible side-effects?

Behind Ben, a line of steampunk Cybermen stretch into the distance. Above these cyber figures is the statement: “Uncooperative patients will be assimilated.”  If you know your Doctor Who you are very familiar with these cyborgs that vanquish all human emotion and replace it with cold hard logic.  If you look closely you will see that upon each cyberman breast plate a there is a FICO logo next to a small capsule.  This image harkens back to an epatient.net blog and discussion from the summer. 

In June Alex Albin’s post “FICO’s new Med Compliance Score: #FAIL” was cross posted on epatient.net.  The blog post explained FICO’s decision to track patient medical adherence via third party data sources.  FICO was planning to use a combination of retail purchase history, geo-credit profiles and income wealth indicators to compile a data base that could be used as a tool to judge patients.  With this tool providers and pharmaceutical companies could easily tell which patients were prone toward non-compliance.

Yes, the tool could tell you who might be non-compliant and give providers the data needed to guarantee a pool of adherent, assimilated patients.  But it could not tell you why they were not taking their medication.

Toward the lower half of the painting is a steampunk Dalek.  Dalek’s are also cyborgs and are an arch-nemesis from Doctor Who.  They have had every emotion removed except hate. Their pepper-pot form and catch phrase, “Seek, Locate, Exterminate!” permeates pop-culture.  The traditional catch phrase has been replaced in this painting by: “Seek, Locate, Medicate” and alludes to a statistic from May 2011 in the Wall Street Journal.  1 in 4 children are on chronic prescription medication in the United States.

So, let me clue you into a few things.  The number one blogging key word search term for patients is uncooperative.  If you attend medical conferences you will repeatedly hear we are non-compliant.  If you listen to specialist like Ben, a large portion of the adult population in this city cannot read at all, let alone complex instructions.  And if one in four children is prescribed chronic medication, we aren’t dealing with a compliance problem; we are facing a massive level of over-medication.

So, I think Ben has one of the most appropriate jackets in the Gallery.  I really hope he wears it everywhere; for I am steamed about these statistics.  And as far as a punk is concerned, I know from years of selling fireworks what a punk is for.

Punks light fires.