The Walking Gallery Year 4: June 16, 2014- June 4, 2015

This is the fourth year of the Walking Gallery of Healthcare.  We now number 357 members walking around the world with patient story paintings on our backs.  There are 43 artists in the Gallery and all of them are listed at the bottom of this post. 

This "walking wall" is changing minds and opening hearts.  They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience.   They are providing a patient voice, and by doing so, are changing the conversation.

An artist or artists will interview medical professionals and lay individuals to form a patient centric narrative. The artist will then create representational imagery and paint that picture story upon the business jacket of the provider of the narrative account. The provider of the patient story aka “Walker” will wear the jacket to medical conferences and events in order to disseminate the patient story to a large group of policy minded attendees and to represent the individual patient voice in venues where they are underrepresented. Further, both artist and walker will support the spread of the story and image via social media.

As of June 2015 , 357 unique Walkers have joined the Gallery wearing 393 jackets.  The Gallery has representatives on five continents, but the majority of Walkers reside in the US. One artist creates the majority of the art, but new artists are frequently joining the movement.  The Gallery is promoted heavily on twitter, facebook and personal blogs.   Its widening appeal within the health conference community is creating a new space for patients at such events.

For more information about joining the movement please scroll to the bottom of this post.

The Walking Gallery of Healthcare from Eidolon Films on Vimeo.

Year Four:
393. "Walk to School" a jacket for Isaac Holliday

392.  "A time of showers." a jacket for Vicky Hinebaugh

391. "The Helmet" a jacket for John Hinebaugh

390. A jacket for Christopher Closson painted by Shannon Shine

389. "No Going Back to the Past" a jacket for Erina Moriarty

388. "Empathy" a jacket for Caleb Picard

387."Seeing the steps before you" and jacket for Michael Weiss

386. "Metamorphosis" a jacket for Lisa Cahill Rodriguez by artist Courtney Mazza

385. 'The Power of Scatter" a jacket for A.J. Montpetit

384. "The Grass is Always Greener on the Other Side." a jacket painted and worn by Shannon Shine

383. "HIT in us and among us" a jacket for Alice Loveys

382. "I got your 1 patient here." a jacket for Casey Quinlan

381. "Thank You" a jacket painted and worn by Tony Zieger

380. "My Medicine" a jacket for Carly Medosch

379.  "Wilson" a jacket for Gabriela Wilson

378. "All That is Precious" a jacket for Jason Wolf

377."Transplant Team" a jacket painted and worn by Tony Zieger

376 "Give Back" a jacket for James Hooten by artist Jenn Toby.

375."Helping Hand" a jacket for Lynn Rippy by artist Camala Walling

374 "Confronting" a jacket for Steve Huey by artist Jordan Lanham.

373. "Chocolate Pudding to Chocolate Eyes" a jacket for Kelly K by artist Josh Miller.

372. "More Than Pride" a jacket for Robert Tinker by artist Te'j Matthews

371. "Floating" a jacket for Amy Heymans

370. "A Pause for Station Identification" a jacket for Wendy Station

369. "Shattered" a jacket for Catherine Coste

368. "Origin Story" a jacket for Jonathan Bush 

367. "MO Dairy" a jacket for Amy Throndsen

366. "My Heart" a jacket for Joanna Brogdon

365."Community" a jacket for John Sharp

364. "Tick Tock,Tick Talk" a jacket for Fernando Martin-Sanchez

363. "Reconciliation" a jacket for Vanessa Carter

362. "Helen, The Fearless" a jacket for Helen Ying

361."The Cupboard Was Bare" a jacket for Shannah Koss

360. "Butterflies" a jacket for  Mélanie Péron

359. "Rolling the Dice" a jacket for Lorre Wisham

358."Silos" a jacket for Keith Boone

357."Antibiotic Apocalypse" a jacket for Kelly Grindrod

355."Watching Them Grow" a jacket for Megan Sargent Grocki

354. "Generations" a jacket for John Mattison

353. "With This Ring" a jacket for Cherise Shockley

352. "Saving Her" a jacket for Martin Johnson

351. "Praying with You" a jacket for Kenneth Wells

350. "Another Day Before Us" a jacket for Mike Finley

349."The Legacy of a Free Lunch" a jacket for Karen DeSalvo

348. "Missed" a jacket for Meryl Bloomrosen

347. "It's a Mystery" a jacket for Annette McKinnon

346.  "Understanding Empathy" a jacket for James Spicka

345. "This Pearl of Great Price" a jacket for Clarence "Reggie" Williams

344. "We Can Do It" a jacket for Amy Lynn Smith

343. "My Diabetes Secret" a jacket for Christopher Snider

342. "Threshold" a jacket painted and worn by Julia Anderson

341. "The Golden Kidney" a jacket painted by Tamela Mack

340. "The Outside In" a jacket painted by Zoe Carr and Thomas Richardson for Zoe Carr

339. "Release" a jacket for Lauree Ostrofsky

338.  "Rainbow Road" painted by Courtney Mazza and Worn by Abdur-Rahim Rahmaan

337. "On the Other Side of the Wall" a jacket painted and worn by Rachel Fields

336.  "Sorry For Your Loss" a jacket painted and worn by Hazel F.

335.  "Donnell 2" a jacket painted and worn by Donnell Bonaparte

334.  "Decisions" a jacket painted by Olivia Dias for Michael Dias

333. "War" a jacket worn and painted by Daquane

332.  "Red Phoenix"

331. "Rainbow Phoenix" a jacket worn and painted by Nikai

300.  "Choices" a jacket for Karen Linder-Staubs

329. "The Foundation of My Life" a jacket for Kathy Nieder

The Artists of The Walking Gallery:

1. Regina Holliday 338 jackets

2. Isaac Holliday 6 yrs, 1 jacket

3. Becca Price, 1 jacket

4. Miriam Cutelis, 1 jacket

5. Ess Lipczenko, 1 jacket

6. Ben Merrion 1 jacket

7. Courtney Mazza 8 jackets

8. Michele Banks 1 jacket

9. Megan Mitchell 15 yrs 1 jacket

10. Robert J. Filley 3 jackets

11. Anita Samarth 1 jacket

12. Mary Welch Higgins 2 jackets

13. Richard Sachs 2 jackets

14. Jonah Daniel 5yrs  1 jacket

15. Fred Trotter 1 jacket

16. Leela 7yrs 1 jacket
17. Gayle Schrier Smith 1 jacket
18. Moira Simms 1 jacket
19. Joan Holliday 1 jacket

20. Adalyn 1 jacket
21. Chris Chan 1 jacket
22. Amy O'Hanlon 1 jacket
23. Vera Rulon 1 jacket

24. Jessica Nicula 2 jackets

25. Nikai 1 jacket
26. Deonm, 10years, 1 jacket

27. Daquane, 1 jacket

28. Olivia Dias, 1 jacket

29. Donnell Bonaparte, 1 jacket

30. Hazel F., 1 jacket

31. Rachel Fields, 1 jacket

32. Zoe Carr, 1 jacket

33. Thomas Richardson, 1 jacket

34. Tamela Mack, 1 jacket

35. Julia Anderson, 1 jacket
36. DJ Hamilton, 1 jacket
37. Jenn Toby. 1 jacket
38. Camala Walling, 1 jacket
39. Jordan Lanham, 1 jacket
40. Josh Miller, 1 jacket
41.  Te'j Matthews, 1 jacket
42.  Tony Zieger 239
43   Shannon Shine, 2

If you are interested in joining the Walking Gallery here is the info:

Read: http://reginaholliday.blogspot.com/2011/04/walking-gallery.html 

to understand the origin of the idea.

http://reginaholliday.blogspot.com/2011/06/walkers-oath.html to understand the sacred nature of this path

To view the jackets in year one 1-162

http://reginaholliday.blogspot.com/2011/06/welcome-to-walking-gallery.html

To view the jackets of year two 163-251

 http://reginaholliday.blogspot.com/2012/06/walking-gallery-walks-on-year-two.html

To view jackets of year three 252-328

http://reginaholliday.blogspot.com/2013/08/the-walking-gallery-year-three.html

Logistics of the Walking Gallery:  What you need to do to be a member: 

1.  Promise that you will wear this jacket to conferences and public events at least 2-3 times per year in order to spread awareness of the power of the patient voice.

2.  Send a business jacket. Please do not send jackets made of seersucker, corduroy, knit, denim, leather or stretch fabric, as they are hard to paint on.  Also this is a business jacket on purpose, we are painting on the “uniform” of the conference attendee.  Fabrics that work well are poly-blends, linen, cotton and wool. Also you might want to by a jacket a size larger than you usually do as the painting will stiffen the back and make it harder to close the buttons.  

3.  Tell me your life/patient story, your patient-centered concept that is the center of why you work in health and medicine. Please include personal details of your life so I can more fully realize your image.  You can tell me which story elements you do not wish to publically disclose in text, but it does help to know the underlying experiences and conditions which are the source of your mission. Please send via email with some pictures if possible of yourself or the people in your story.  If you don't want to provide a picture, that’s okay, I have a vivid imagination.  Also please print it out and send with jacket so I can keep track of jackets and their stories.

4.  Artists can participate by painting their own jacket or another's or both.

5.  This movement is spread and organized through social media.  You will need to use twitter, Facebook, LinkedIn etc. to support the mission.  I am using Twitter hash tag to link us all together so please tweet about your jacket appearances under #TheWalkingGallery

6.  You are free to use the image in your own advocacy mission; I also retain the right to reproduce the image for advocacy purposes and write about your mission in areas you are comfortable with disclosing. 

7.  Donations are welcome to offset the cost of paint and shipping, but are not required and you cannot buy a jacket painting.  You are joining a movement and this is a sacred oath to walk the walk and spread the word.

(If you like the health activism work I do and want to support it in a sustaining way you can donate to my @gittip account: https://www.gittip.com/ReginaHolliday/  but it is in no way required. )

Welcome to the Gallery.

Any questions?

The Walking Gallery at #Artscape2014

Having just returned from an eleven-day road trip to visit my family in Oklahoma, I am very glad to be home.  I love living in a in the quiet serenity of Garrett County Maryland and miss the green peacefulness when I am away.   While in Oklahoma, I enjoyed spending time with loved ones and visiting old haunts.  The boys and I went to the many museums and parks in Enid, Oklahoma.  We also went frequently to my favorite fast food place of all time: Braum’s.

If you have not been blessed to live within a 300-mile radius of Tuttle, Oklahoma you might not be aware of the epic coolness of Braum’s.   Braum’s Ice Cream and Dairy Stores is a family run business and a really neat example of vertical integration.  The business controls virtually every element of the supply chain.  They own the cows, the farms, the trucks and manufacturing facilities; because of this level of control they have amazing food at very affordable prices.  They even have small grocery stores called “Fresh Markets” with fresh produce folded into many of their locations.  As an activist focused on health, this gladdens my heart.  Many of these “Fresh Markets” are the only grocery stores in easy walking distance within a community.

Five years ago when I was looking for a new health insurance policy for my family, I made my choice, in part, because of my knowledge of Braum’s.  I knew how amazing a burger could taste with a vertical integration model; imagine what that model could do to one’s health care.  So I chose Mid Atlantic Kaiser Permanente.  I rejoiced in one stop health care with a lab on site and an electronic health record portal that is open to patients and family caregivers.

I personally have enjoyed being a KP member these past few years. In addition, I have been very grateful to The Kaiser Permanente Center for Total Health for their hosting of the annual gathering of The Walking Gallery in 2011 and 2012.  I love their appreciation of the place of art within wellness. Also, my son Isaac and I marched with other KP members last summer in the DC pride parade and had the best time. (Isaac danced for about a mile of the route) 

Most recently KP asked me if I would be willing to represent The Walking Gallery at Artscape Baltimore in their tent on July 18-20, 2014.  I happily said yes! Artist Courtney Mazza and I will be painting onsite Friday through Sunday. KP also agreed to host an official gathering of The Walking Gallery in the tent from 4-6 on July 19^th.  We ask all Walking Gallery members in the area to gather with us.  In addition, each evening we will guide 5 artists/future gallery members through the process of painting their own jacket.  So if you know anyone who wants to join the gallery onsite in Baltimore, please encourage him or her to come.  I find children are especially eager to join onsite or paint a jacket for a parent. (for more information on The Walking Gallery of Healthcare movement see video below)

The Walking Gallery of Healthcare from Eidolon Films on Vimeo.

We will be tweeting on site with the hashtags #TheWalkingGallery and #artscape2014. You can find us at the Kaiser Permanente tent at Artscape about 2 blocks from the North stage on Charles street. I look forward to seeing you there!

Dandelions and Micro Galleries

When I was a small child I would watch my grandpa walk endlessly in our back yard with his dandelion pruning fork.  He would move from flower to flower lopping off the blossoms in an endless futile battle.  It was futile in part because every flower he missed would develop a beautiful puff of seeds.  My sister and I could not help but make a wish and blow them all over our yard.  Even without our dubious help Grandpa was bound to fail.  Dandelions not only are great at spreading their seeds, they have a taproot that is ten inches long. If any of the roots remain in the ground, the plant will continue to grow.   My grandpa has been gone for many years. His house where I grew up was leveled. But when I visit the empty lot, I am greeted by dandelions.  

You might wonder at my fixation on weeds today.  I recently bought a home in Grantsville, Maryland and I am learning all about property and yard maintenance.  So many local friends and family members have been guiding me through this process.  It has been a busy and challenging time.  I have been on the road often speaking about advocacy. When I am home, I unpack boxes.

I am creating a micro gallery in my house in the room that was once designated the living room.  It has it own entrance and own interior doors, so I think it will make an excellent small gallery in Grantsville.   (Let me know if any of these paintings interest you.  Most are available to purchase to help support my continued mission.) The gallery in my home is not the only micro gallery I am working on. 

Many of you have asked about when will we have our large Washington, DC gathering of the Walking Gallery of Healthcare.  This year we are having many small gatherings around the world instead of one large one.  Throughout 2013/2014 we had several small gatherings.  We met at MEDX at Stanford in September.  

We met at Planetree in Montreal in October.  

We were at HIMSS in February. 

Several of us were gathered at Rev 2014 in DC on May 9^th.

There were many more events where members attended singly or in small groups without official conference recognition.  Thank you for spreading the word!

We have several upcoming gatherings.  On June 3rd we will meet in Baltimore at the American Heart Association event QCOR14: Quality of Care and Outcomes Research Conference. Our gathering will be from 5:30-7:30 during the poster session at the Baltimore Hilton.  Refreshments will be served.  I know this event is at the same time as some health events in DC, but hope to see many of our east coast walkers in attendance. 

We will gather at DIA14: Drug Information Association Annual Meeting in San Diego at the San Diego Convention Center on June 16^th from 4-6pm. This reception is being hosted by DIA in honor of the Walking Gallery of Healthcare.  I hope to see many of our west coast Walkers at the event.  We will have a few other small gatherings in 2014 and I will alert you as they come up. 

In Summer 2015, I plan on having a large event here in Garrett County Maryland.  I would like to create a conference that embraces all of us on many levels.  I think it will be a kind of Burning Man meets Health 2.0 in a rural mountain community.  I am already connecting with scientists who are also acrobats, doctors who are musicians and fire dancers focused on healthy living.  It should be an epic event.  The large 2015 gathering of the Walking Gallery will be at that event.

Meanwhile my fellow dandelions, I see you flying from venue to venue.  You number over 300 walkers and 24 artists.  You are planting new seeds with really deep roots.  You are causing folks to ask important questions inspired by your stories.  You are changing hearts and minds and helping wishes come true.

I pray that I will see you soon.  

Your friend, Regina Holliday

Hope

This was the third time I circled the perimeter of the College of New Jersey looking for the visitor parking lot.  Most of the parking lots were an expanse of ice and snow on February 19^th.  I gave up and asked the campus police where was a safe place I could park.  I was very happy that I was able to drive to the venue.  Back in July when I had been invited to present, I did not have a driver’s license.  I would spend the entire summer in driver’s classes and after trying to pass my Maryland’s driving test three times; I finally succeeded on the 4^th try in September.   

Needless to say, I am not very good at driving.

My family was a little worried that I was going to drive across Pennsylvania and into New Jersey as a relatively new driver.  After I hit my first New Jersey pothole going 55 miles an hour, I was pretty worried too.  I arrived in New Jersey on the evening of the 18^th and stayed with the family of John Phelan as they were willing to play host.  John is a member of The Walking Gallery.He is also the founder and CEO of Zweena.  I really enjoyed talking with him about Health Information Technology while I was visiting.  I am thankful to his family for tolerating our mutual interest in all things data.

On the 19^th I parked my car and rolled my suitcase full of art supplies to the student union.  I set up my easel and began to paint.  Since I knew little about this venue I began a Gallery jacket.  Like many venues I have attended, the custodial staff was the first to approach me and ask questions.  Next the curious students walked up to me and began to speak.  I was so happy the students were asking questions.  All too soon, I needed to put away my easel and walk to class to begin my lecture.

Yifeng Hu, a faculty member of the Department of Communication Studies, invited me to guest lecture and this is how she invited me:

“First, let me briefly introduce myself. I am an assistant professor at The College of New Jersey (in Ewing, NJ, between Trenton and Princeton).  I got to "know" you through two NPR articles and then your blog. I wanted to contact you for two reasons. First, as an individual, I am so with you and your work!

Second, as a professor who teaches an advanced undergraduate course titled "New Media and Health Communication," I can't help but inviting you, or attempting to invite you to give a speech (or a virtual speech via Skype etc) to my class, because some topics we survey in the class are so relevant to what you have done and are doing, e.g., patient doing online health search or bringing online health information to the doctor, EMR. I teach this course once a year in the spring semester; if you are interested in the idea, I will contact you again when we approach the end of this year.

Meanwhile, if you wish, I think our bigger campus community will benefit a lot from your talk. If you wish to give a campus wide talk, we can do so…”

I keep my tone even and did not over-power Yifeng’s classroom as I began to talk.  The students were well prepared to hear me speak.  Yifeng had encouraged all of them to write on my blog and read my posts. They asked wonderful questions and one students was so engaged she became part of my painting the following day.  She became the woman whose gown spirals away within the coil of a question mark

This is the painting “Hope.”

I painted this in the student union.  It began with a maelstrom of clouds. Students came up to me throughout the day and asked about the significance of the painting.  I explained the spiral of energy leading to a question as an image of their college experience.  After awhile I spoke to a young man who was trying to raise funds for an art installation.  I told him about the power of crowdfunding.  He is the man spraying the word “Hope.” The African American woman in the painting was a student who happened by and was happy to see me painting.  All the figures seem endowed with great energy.

On February 20^th I gave a large lecture before various departments.  In this speech I was my usual emotive self and the audience responded accordingly.  I was also a bit loud.  At one point a fellow came from the outside café in the hope of hushing me.  That is rather hard to do as many people have realized over the years.

I wrapped up my speech and thanked everyone especially Yifeng.  She had been such a gracious host.  Do you know she plays the violin?  She is quite accomplished at it.  I hope someday to introduce her the Tom Delbanco, MD who works on the Open Notes project.  As he also plays and appreciates the power of the whole note just as Yifeng appreciates to hope her students have in the future to come.   

The Keeper of the Match

I have read many books focused on patient advocacy and one of my favorites is “For the Love of Scott” by Jo Hamilton. She gave this book to me a year before I painted her jacket story.  I read the book and was amazed by all the subtle foreshadowing of her life to come in the stories of her childhood.  The tone of her book reminds me of the Little House and the Prairie stories by Laura Ingalls Wilder.  Her family story is warm and loving though it depicts a tragedy.

I painted “The Keeper of the Match” for Jo to tell the story of the love she has for her brother.

Jo grew up on a farm and was used to the reality of farm life.  When she was a girl she loved a farm pig named Spot.  She would ride spot and talk to her.  Spot was a very smart pig.  One day she called for Spot and she did not come; Spot was gone.  She asked her father what had happened.  Her father told her Spot had “Gone to market.”  Jo did not question what this meant and just accepted it as part of life on the farm.  Jo also helped her father in the barn by cleaning up 14 piglets newly birthed by a sow.  She was only a little girl but was already becoming a caregiver.  So I painted a piglet in the lower corner of the painting.

Jo’s youngest brother Scott was born in September of 1960.  Although Jo had hoped for a sister, she fell in love quickly with her little brother.  She would rock him endlessly and was so happy when they found a milk substitute for him made from soybeans.  Scott was allergic to milk and the soybean formula saved his life.  So I painted soybeans in the top panels of the painting.

As many children are wont to do Jo and her brothers played with fire as youngsters.  Jo and her older brother Denny were considered responsible enough to light matches and burn trash.  They were still children though, and decided to try to mimic adult smokers by smoking cornhusks.  As Jo tried to inhale the burning cornhusk, a breeze came up and roasted her hair and eyebrows.  Her little brothers watched with horrified awe.  Jo knew she had to be a good influence for her little brothers, as she was the keeper of the matches.

As Scott grew he became an avid baseball player.  Jo was able to attend many of his games when she was an adult and Scott was in high school.  Scott was so good that he went to college on a baseball scholarship and was eyeing the minor leagues. 

In August of 1983, Scott began complaining about back pain.  He went to the doctor.  The doctor was concerned as he found a lump in Scott’s groin.   Scott had testicular cancer.  Scott had surgery and went on the have aggressive chemotherapy.   Due to Scott’s great physical shape prior to illness he was tolerating the chemo series fairly well.  By the third session a CAT scan revealed that his abdominal tumor was gone.

Scott did not want to complete his fourth and final round of chemo.  The family was not sure it was necessary.  The doctors pressured him to continue.  Jo counseled Scott with, “It’s only five more days of chemo.”  But she told him that the choice was his.

Scott began his final round.  This session was excruciatingly painful.  Scott felt like his veins were burning up. Scott was given a Cisplatin overdose. He had been given 3 times the daily dose for five days due to a mixing error.  No one ever checked the labels on the bags.  So I painted the provider with his hands behind his back. 

One of the last rational things Scott would ever say during his very painful death was to his sister Jo.   “Jo you have to tell people what they have done to me, you have to tell them!”  Scott began hemorrhaging throughout his body.  He was given paralyzing medication to keep him still. The family stayed by his side throughout the onerous ordeal.  He struggled on eventually receiving 74 pints of blood.

In late December Scott seemed to be recovering, he was going to be taken off the ventilator. A nurse determined there was a hole in the PEEP tubing, which compromised his oxygen level.  After suffering a massive overdose Scott died from another preventable error.

So this is Scott’s story and it still burns.  This is the story that Jo is still telling three decades later.  She will never stop telling it because Jo is the keeper of the match.

Regrounding

When I painted Lori Marx-Rubiner’s jacket the lights were flickering in the high winter winds.  My eldest son complained about the constant loss of WIFI.  I called a Comcast technician and continued to paint.  When the technician arrived he showed me wires that were melted due to power surges and encouraged me to call the electric company.  I called them and they sent someone out.  The technician inspected the high wires and explained the problem. We had lost our neutral ground and our house needed regrounding.

 So I was inspired by a life that I read about and I life I lived as I painted “Regrounding.”

Lori has been through a lot shocks in her life.  She is a 12-year breast cancer survivor. She was diagnosed at 35 after having a baseline mammography.  She was married with a three old son when she was dealt this blow.  She rapidly went from a “why me” mentality to the stance of an empowered patient.  She fought cancer, but she did not fight alone. 

Her entire community stood beside her. That is a wonderful thing.  A family going through cancer treatment so desperately needs the support of a wider community. In the years, hence Lori has become part of an even larger community of advocates.  She speaks out about cancer and breast cancer and attends medical conferences to share the patient view.

In 2009, her doctor told Lori that her tumor markers were up.  She was scanned and there were signs of healed bone metastases.   She is taking medication to heal the bones and injections to keep hormone levels low. 

She is regrounding.  Cancer may be her constant companion, but so is her local community.  She is taking the energy that pulses through her and channeling it through her Judaic faith and her wider advocacy.  She is one with the solid ground that supports so many.  That same ground will someday embrace her.

In a life we are blessed with so much energy.  That energy can be used in destructive ways or for healing.  Lori has chosen to be a grounding agent, and thereby helps so many.