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Saturday, April 30, 2011

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 30th 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 20th 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 30th 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.
IMG_9456
I would paint and post images of three jackets for Jen:  ”Data Prison” on October 5th 2009,
Twitter on the Titanic photographed by Ted
Titanic” on December 14th 2009
Tough Girl Advocate
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.” 

caregivers clock

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.

Roni in his jacket

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 3rd 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.”

Chiara and Regina

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 1st 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.
  

14 comments:

  1. As usual, your words and images spark many thoughts and feelings.

    The idea of walking gallery reminds me of the walking wounded, the a semi-spontaneous gathering of energetic advocates reminds me of flash mobs, and the wearing of painted jackets suggests splashes of paint ... leading me to think of a splash mob.

    Your comment about the differences between channeling your energy through art vs. writing reminds me of an inspiring documentary I saw and wrote about: Joni Mitchell: Woman of Heart and Mind, Strength and Vulnerability. Here's an excerpt that I find relevant to your story:

    After delving into the depths in music, she finds release in painting:

    "Any time I make a record, it's followed by a painting period. It's good crop rotation. I keep the creative juices going by switching from one to the other, so that when the music or the writing dries up, I paint. You rest the ear a while and you rest the inner mind, because poetry takes a lot of plumbing the depths. I mean, the way I write, anyway, it takes a lot of meditation. Without the painting to clear the head, I don't think I could do it."

    I'm also reminded of Marianne Williamson's quote about "as we let our light shine, we unconsciously give others permission to do the same".

    Thanks for your ongoing efforts to plumb the depths and giving others permission to shine using your own special gifts.

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  2. I was a founding trustee on the Centre for Compassion in Healthcare in NZ.

    I am also an artist and use bodycasting s a process in my Good Grief program. What a joy to read this item....Clarissa Pinkola Estes in Women who run with wolves speaks of the creation of a scapecoat.

    In honour of your work... i love you ....and dedicate you on my next radio program!!!

    Pat Armitstead

    Managing Change, Building Productivity and Resilience

    Keynote Speaker, Facilitator, Author, Radio Producer

    Phone +649 4244234 Mobile +64 21 687 635

    Email pat@joyology.co.nz Skype joyologist

    Twitter joyologist1 Website www.joyology.co.nz

    “Radio Improv – Joy In The Moment” Planet FM 104.6 – www.planetaudio.org.nz/radioimprov
    you can listen online ...
    airs every Tuesday evening i will dedicate this Tuesdays show to your work....

    http://parmitstead.blogspot.com/

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  3. Regina,
    I fully agree with Joe that "as usual, your words and images spark many thoughts and feelings".
    I am not sure what I like most, your prose or your paintings, but definitely believe that they are inseparable.
    Your today's piece showed me another way to talk about patient-centered care and patient rights that can be done without powerpoints, just by being a "walking jacket".
    Would love to be in person in the "Walking Gallery" on June 7, but nevertheless my heart and my spirits will be with all you there...

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  4. Regina

    Every time I think I've got a bead on your work, you confound me with a revelation about another amazing initiative.

    This is such a wonderfully portable (no pun intended :)) idea - no surprise its source is one of our other great health catalysts, Jen McCabe - and I look forward to promoting it in Europe.

    Roll on 7 June!

    @andrewspong

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  5. Regina,

    What a wonderful way to spread patient advocacy on a portable level. Your discussion of what it could mean to wear one to a conference and feel all the things that the patient feels moved me deeply. Yes, we can go back to being doctor, nurse, or chief executive - but can never go back to doing it quite the same if we have been moved by your art and the experience of being truly individual.

    As always, I am in awe of your talent and your passion.

    @s_eller

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  6. What an absolutely WONDERFUL idea - I would be there with bells on (and a jacket!) - but - I'm in Ottawa ... I shall be there in spirit, however, and am sending you emotional support and creative wishes - which I hope will make up for my absence (truly sorry I can't be there to witness this event).

    PLEASE - make sure you get great photos of every jacket so you can post them to your blog afterwards - I'd love to see the results of this great idea.

    Peter ... @CrazyComposer

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  7. You are an inspiration. And I am wowed to call you a friend.

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  8. Regina,

    It's an honor that you want me to be a part of the Walking Gallery to advocate for medical records and health care. You are an inspiration to me and my mission to continue to raise Medical Record Awareness. I look forward to wearing my Mural Jacket of me and my father (David Bynum) medical record story. You are a Blessing to me. I pray that God continue to use you to change the issues the world!

    Thanks
    Eunita Harper Winkey

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  9. Regina,

    Fantastic - You move hearts, minds and spirit with your work. I'm sure your new movement will make a huge impact and open new dialogue whereever it appears. Sure wish I could be there. Enjoy.

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  10. I have a vest I've worn routinely for years. It's become a recognition symbol, almost a personal brand. It's falling apart and ready to be retired. I'm thrilled to be replacing it with something even more meaningful. Thank you.

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  11. I find you inspiration and you provoke my thoughts about advocacy and health and how it all comes down to people, people, people. You shine in all you do, Regina.

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  12. Oh, and I wish I could paint (I'm terrible) but I love writing on HealthCentral.com - an outlet to help myself and others. Someday I'd love to learn how to paint!

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  13. Thanks Regina, great event!

    I don't know if I told you but after a moment I took off the fail whale and just explained that the image represented the current opacity of healthcare pricing that FairCareMD is designed to cut through. It, like FairCare, is a work in progress. It serves as a good "before" metaphor of a before and after image.

    What would be really cool would be to do like I did with your painting at Health 2.0 San Francisco last year, pain one part at a time and snap a photo. I will do the play by play on the blog and we can repost it here too.

    The parts I suggest:
    0. The Opacity (current status)
    1. The Idea (logo?)
    2. The first deal (handshake) - $85 office visit 5 star doc
    3. Bridge foundation side one: The first 100 docs in NYC signing up, first Hospital Vassar Brothers...
    4. Bridge foundation side 2: The First 100,000 patients using the site
    5. The innumerable masses crossing the bridge that we are building...
    6. A nice delta world logo on the bottom (see image here: http://blog.faircaremd.com/2010/03/change-the-world-one-toothache-at-a-time/)

    Just a thought, but one I thought you would like.

    See you soon.

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  14. I find you inspiration and you provoke my thoughts about advocacy and health and how it all comes down to people, people, people. You shine in all you do, Regina.

    ReplyDelete