Time to Care

When I was a little girl I would stare for hours at the wooden clock upon the wall.  I found it quite intriguing.  The clock was a little house with a bird that would dip its beak outside its window and cuckoo upon the hour.  A little wooden boy and a little wooden girl would meet in front of their doors and share a kiss and then depart. The clock seemed magical and full of hope.  The sun would always rise, the birds would always tweet and the girl and boy would always kiss.

But life is not like wood-work clocks with metal pinecone counterweights.  Life is unpredictable and sometimes you wake up to find the time piece is still ticking but the boy is lost forever. 

And that is how Chiara Bell found me, a lonely widow with a broken heart that refused to stop ticking. She found me with a tweet, asking for a jacket painting like the paintings Jen McCabe wore. I painted her “Caregiver’s Clock.” I painted soul crushing pain upon her back.  Here was a clock with no hands to sooth you.

Time passed and Chiara tweeted.  I saw her walk away from her first company in order to build a second.  She told me the new company would be called Careticker.  She wanted to create a company that would make it easier for patients to plan discharge transitions and would allow active communication between the care team and approved family members via text messaging. She asked me to paint once again and I was inspired by the name of her new concept.  I asked her, “What do you know about the origin of the ticker tape machine?”

The ticker tape machine was the first digital electronic communication technology to be used in the home. It utilized paper and telegraph lines to print out stock quotes, and like an erratic clock, it ticked; hence, the name ticker tape.  It revolutionized trading, for suddenly, one did not need to be on the trading floor to make decisions in a close to real-time fashion.

So I painted this canvas for Chiara.  In the background, spool upon spool of ticker tape cascades.  To the far left, a family vignette includes a wealthy mother, loving daughter and family nurse as they quietly read the stock quotes spooling amongst them.  To the far right, a modern mother rests in the comfort of her home with her little son beside her.  She is reading a text from the hospital as a nurse responds via Careticker.  A large image of a smart phone unites the two scenes with streaming texts on the care condition of the patient.

A few months later Chiara came to DC to attend the mHealth Summit.  I asked her if I could share her booth space.  Chiara was presenting in the start-up pavilion and Greg R. Itzenson from our host StartUp Health, offered me my own space beside Chiara.  So that is how I came to represent and the Walking Gallery and paint on site at the m-Health Summit.

Over three days I painted five jackets.  One of the jackets was for Chiara Bell.  It is called Careticker and it is a happy jacket.  Here the clock of my childhood is transformed.  The background roils with spool upon spool of tape.  To the left is the red-hued past filled with a lack of data access, to the right is a blue serene future. 

Centered is the clock.  Its pendulum swings back and forth, as we totter to the future while lapsing into the past.  The classic cuckoo door is wide open and the bird has been replaced with a triumphant patient.  Center on the clock face is a smart phone.  Here is communication in real-time. Here is a new world of care.

So Chira Bell has two jacket paintings focused on time: the pain of time that has stopped and the joyous flight of time when we are with our loves.  That is just and that is right.  For I know the origin of the word “clock” it hails from the Celtic “clagen” meaning “bell.”  If there is anyone I would trust to ring the bell, either in peals of rejoicing or tolls of warning, it is Chiara Bell.    

The Walking Gallery

We are the Gallery that walks.  We are the Patients that wear our stories on our backs.  Soon we we shall to come to a city near you and and create gallery space in moments.  We won’t pound a single nail into the walls to hold the art.  Dozens of people will walk into a space wearing business jackets or doctor’s lab coats.  That alone is not unusual.  But these jackets will be works of art.  Each one shall be painted with the story of a patient or an element of medical advocacy by me or another artist.  These masterpieces will be worn on the backs of government employees, technology gurus, medical professionals, social media activists, CEO’s of companies and artists.  It shall be a great meeting of the minds.

The Walking Gallery exists because Jen McCabe followed me on Twitter on May 30^th 2009.    That was the day before I placed the Medical Facts Mural in Pumpernickels Deli on Connecticut Ave.  That was a day when my Fred was still alive and could speak and eat again because of the wonderful care he was receiving in Washington Home Hospice.  Jen was one of my first followers on Twitter and is such a glorious spark of life.  

On August 20^th she emailed me after I had posted a comment on her blog and asked me if I would paint a series of paintings on the back of her blazers to wear to upcoming health meetings.  I told her I would be honored to paint jackets for her.  Jen responded, “Symbols and talismans mean quite a bit to me, and having things constructed by friends is one way to remind myself why I do the work I do and forego so many of the other things I enjoy.  I'm so happy to have a wearable badge of courage - just wrote an index card for myself to remind me of the importance of patient advocacy by "any means necessary."  Art is another one of those means.”

I finished the second mural “73 Cents” on September 30^th 2009.  It was my feverish obsession in the weeks after Fred’s death.  “73 Cents” was a thing that I had to do.  It soothed my soul; it spoke to me and calmed my aching heart.  It gave me a reason to leave the solitary confines of my mind and my widowhood.  It gave me permission to stand on the street and talk with complete strangers about the grief roaring within me.  I often go to social justice events and hear about the chronically homeless on the street.  I hear workers complain that they find small single apartments for these folks to live in, but instead many return to the street. 

I think I know the reason why. 

It is hard to be alone when sadness is engulfing the mind.  The street is alive, and there the broken congregate and help each other.  Each day I painted I made many new friends, but those who came back and spoke to eye to eye were often the most dispossessed and the homeless. 

Without Jen’s suggestion that I paint jackets, I would have gone home, my Magnum Opus done, to loneliness and grief.  Yes, I was still blogging, but that was not enough.  I had to paint.  I had to spread the word through art.  Jen had provided a new “wall,” and that wall could walk into the Mayo clinic or the National Board of Medical Examiners and remind everyone of those patients who suffer in a system without real time data access.

I would paint and post images of three jackets for Jen:  ”Data Prison” on October 5^th 2009,

“Titanic” on December 14^th 2009

“First Responder” on January 12th 2010.

As Jen and I began to tweet about the jackets, Elizabeth Cohen from Empowered Patient on CNN would see our twitter stream.  She said she would write a piece about the jackets on CNN health as they captured the zeitgeist of the patient data access movement that @ePatientDave had so apply entitled: “Give Us Our Damned Data.” 

Due to Jen’s very public appearances wearing patient advocacy jackets, two other thought leaders would contact me to obtain images they too could wear.  Chiara Bell from Enurgi, later to become part of Univita Health, would ask to have a jacket of her own.  She wanted to show the importance of the caregiver in patient care.  I made for her the “Caregiver’s Clock” a painting that depicts both the family member as caregiver and the professional caregiver caring soothing the terminal patient.

Finally, Roni  Zeiger from Google Health would contact me.  He wanted a jacket that depicted the passionate need for data access felt by the patient/caregiver.  I painted for him “Data Cloud” that recreated my desperate feelings to find out the truth via the Internet.  Roni Zeiger then wore that jacket at the Community Health Data Initiative event on June 3^rd 2010 before a crowd of hundreds including Secretary of HHS Kathleen Sebelius.  Roni would finish his presentation about the Combining of HHS Hospital Compare with Google’s Fusion Tables Cloud Database App, by turning his back on the audience and saying, “The last thing I would like to mention is that, let’s not forget all of these data points tie back to individual people and their stories.  And many of you probably know of the work of Regina Holliday.  She is an incredible woman I met recently.  An artist. She made- I am not a fashion guy, but she made this jacket for me.  Feel free to come up after to get a closer look.  We made a deal.  She would make this jacket for me, if I would wear it at important conferences.   This is the first time I am wearing it.   And it is about the importance of data and the importance of talking about data and the importance of technology in the future if health care.”

So, that is the story of five jackets that I painted to spread awareness.  Five jackets. They bring the “patient” into the room and onto the panel, when no patient was invited to attend.  They remind me of the encaustic mummy paintings from 1^st century CE found in Egypt.  These amazingly real and poignant faces stare out above dried sinew, wrappings and bone.  Their eyes sear our souls and remind us, I was once one of you who lived and played, who laughed and loved before I met this fate.   They transcend the dust and the darkness of the ages, and make the lives lost long ago so very real.  The jackets worn by these brave few do the same for data, and pie charts and graphs. 

When you sit in an audience listening to a power point presentation, and the faces on these jackets stare back at you; it changes things.  It adds an edgy sense reality to dry recitation of data.  It wakes you up.

Perhaps you will have the honor to wear one of these creations.  It can be quite unsettling.  People will stop and stare.  You can now enter a conference and feel like an outsider.  Ostracized.  You can be given the gift of experiencing the disconnected feelings of the ignored patient in the room.   People will point and talk about your back like you are not even there.  You are a “case,” an object, you exist to be described and critiqued.   And after being at a conference all day, you can take that jacket off, and be normal again.  Or not.  You can “come out.”  You can let go of that other title, be it, Techie, Doctor, CEO or founder of a non-profit.  You can cease to be defined as the cog you appear to be in the machine called medicine.   You can be simply patient.  You can tell your personal story and reach your inner center as a patient.

Perhaps my painting will help you.  Perhaps it will be the icebreaker you need to let go of the ubiquitous black suit that blends in at a medical conference.  Perhaps it will be way to open up about why we are doing all of this important work.  We are doing this to help patients heal.  We are doing this so we can all live happier lives.

So… CALLING ALL JACKETS!  CALLING All ARTISTS! I need your jackets, I need your stories.  I need other artists who would like to join a movement.  Never let anyone tell you, that you do not have a voice.  Step up and Speak out.  We get great change by doing great things.    You will be surrounded and loved by others just like you.  It shall be a great fellowship of those deeply invested in patient empowerment.    

And then you shall go forth and wear your jacket at other conferences spreading the word about the importance of patient data access and truly patient centered care.  And sometimes you will be the only “patient” in the room.

But you will be brave and you will be proud, for you are a member of The Walking Gallery.