Unfinished

Yesterday, August 27 was the celebration of Jess Jacobs life in California.  A few members of the Walking Gallery were able to attend.  They represented the 396 members who could not be there.   We all cherish her memory.

The east coast friends of Jess gathered Saturday, August 20, to mourn her passing and celebrate her life.  I came to Whitney’s house in my usual fashion with a hoard of supplies.  I brought tables, chairs, paint, brushes, and glitter.  We were going to make unicorn art.  

I also brought a lot of box tops for education to cut out and prepare to mail to raise funds for my son Isaac’s school.  When someone is very sad it helps to keep very busy.

In Whitney’s back yard the cicadas hummed and I stood presiding over a table of industrious friends of Jess. We painted Unicorns and taped down box tops.  We added glitter and told stories of a life. 

Many people came over to our table to trace and paint unicorns.  One of those people was Ross Martin.  He decided to freehand draw his unicorn in ink.  He said he would come back to finish it.   The afternoon progressed, more paintings were completed, and more stories were told.  Soon it was time to thank Whitney and leave.

I packed up my cacophony of art.  I hugged Ross goodbye.  He said, “I did not get to finish my unicorn.”  I said that was okay.  It would be incorporated in a larger piece.  We don’t always get to finish what we start, but our friends will carry it on. 

I put all the unicorns together into one piece of art.  I mailed that painting to Jess Jacobs’ family. It should get there next week, after the celebration is over, after friends will go home.   It will come in the quiet time.

It will represent our oath to tell her story, to finish what she started.

Color It Blue

I flew to St. Louis, Missouri to attend the Medicaid Enterprise Systems Conference August 16-17, 2016.  Xerox Healthcare hosted me and I would be painting in their booth. When I arrived, I walked through the exhibition hall and saw all the usual give-a-way swag: Pens, water bottles, USB sticks, and candy.  I rolled my paint supplies into the Xerox booth and set up my easel next to the item Xerox was giving away. 

It was a coloring book and colored pencils.

As I painted for two days with the Xerox team, I heard so many conferences attendees eagerly thank the team for bring coloring books.  The attendees said they would color on the flight home, in conference sessions, or color just to let go of stress.

The coloring book was such a major part of the conversation that I added it into the painting: “Uniting the Kingdoms.” The upper part of the painting is black and white, waiting to be colored.

As I spoke with attendees, I heard many attendees talking about each state’s Medicaid program as though it was a little kingdom to itself.   So I painted the kingdoms being sewed together by the cables of technology.  I also created a bridge of Legos uniting two kingdoms and honoring a nearby booth that had Legos available for attendees.

On the second day we had a mini gathering of The Walking Gallery, as three Xerox staff members had recently joined the movement.  To the left is Allyson Burroughs telling the patient stories of her father, grandmother and mother.  Then I wear my letter A for "Little Miss A type personality."  Next is Lauretta Sechrest telling the life story of her father who passed away recently.  Finally, to the far right is Tiffani Doyle who tells the story of her sister-in-law and her first born son. 

The second day I painted “Leverage.” 

In this painting, I depicted levers and fulcrums.  Each fulcrum was a piece of the United States flag and it represented the legislation upon which we build our healthcare framework.  A patient, vender, or provider was working each lever.  Each lever propelled into the air a patient, vender, or provider toward population health.  In the center background of the painting was an arch.  Blue sky was in the center and gray sky was swirling all around the arch.  This is the future of healthcare.  It could be gray swirling storm clouds or beautiful blue.

I hope we color it blue. 

The First to Fall

       

On August 10, I was so excited to share that we had reached another milestone in the Walking Gallery.  Five years into our patient rights movement we had reached 400 members!   I even shared the post that lists where everyone lives.  I loved the picture blogger chose for the post.  It was me and Jess assembling the Walking Gallery in its lego form.

A lot of people read that post and reminded me they had moved to a new state or country.  I dutifully changed the post for each request.

Today I added a new country to the post.  I called it Heaven.  I placed Jess Jacob there and cried.

Isaac saw me crying and asked me why.  I told him Jess Jacobs died.  Our friend from DC we played legos with and visited in the hospital.

Jess had been fighting for her life for years. You would have never known that from looking at her.  She was a statuesque beauty who understood health policy.  She was gracious and kind and great at twitter. 

Jess Joined the Walking Gallery in 2012 and her jacket is number 211. "Is she okay?" Her patient story told about her POTS condition.  

When I painted her jacket, I depicted one of the times she fell faint to the pavement. She woke to find strangers looking down upon her.  She would laugh off such medical adventures and do her job and help her friends.  She helped build the lego Walking Gallery and helped prepare for the 2012 gathering in DC.  

In the summer of 2013, I moved to Grantsville and did not get to see Jess as much in person.  She began to have more problems with her care and we created a secret group on facebook to help Jess.  I recruited lovely friends who live in DC and who had never met Jess before but would come over to check on her and make sure she was okay.  Jess reached out to many other close friends and added them to the group so she could have advocates and people to help.  

For the past two years I have had to watch from afar as this wonderful woman grew sicker.  I watched her fight to keep working, fight to be admitted to hospitals, and fight to be believed.  

I watched as so many people fell away from her life as it became clear that she was not getting better.  

I asked her to join us at Cinderblocks 2 in May.  She said she would love to go but she thought she was probably too sick. 

This is the way I would like to remember Jess.  I see her at my dining room table building lego mini figures with Isaac. 

But I will always see another Jess, as I advocate for better healthcare around the world.  I will see her as a patient that the system failed to care for.  I will see her struggle and I will fight for change.

I will never forget she was the first to fall. We will miss her always. 

How to make a tire planter

This is a medical advocacy blog. So some of you may wonder what does tire planters have to do with healthcare?

This summer in Grantsville, MD, colorfully painted tire planters edged the side of Route 40 and delineated the arts and entertainment district in Grantsville.  The students of Grantsville Elementary, their art teacher Kelly Lasher, and other local adult artists created the planter art using rice paper and Dye-Na-Flow dyes. I assembled the art and facilitated the project.  Many a town resident has commented,  "It sure brightens things up!"

And it does.  Sometimes at the end of hard day you just want a little something to brighten things up. 

Guys Tires, Northern Outreach Center and Mountaintop Truck Driving Institute of Garrett College, and local citizens donated the tires. That makes me very happy.  I love to reuse, reduce and recycle.  These tires were destined to end up as trash and they became art instead. 

Chestnut Ridge Nursery of Grantsville donated flowers for the planters.  Local volunteers prepared the tires for display. The Greater Grantsville Business Association helped pay for the flowers and the town of Grantsville approved this volunteer public art project during town council meetings. The planters have been on display since May and the colors are still bright!

We came together as a community and made something beautiful.  Isn't that what happiness and health is all about? 

How to Make a Tire Planter

1. Cut out the scallop pattern with a sawzall

2. Flip tire inside out. (Three strong people are needed for this step.)

3. Scrub tire clean with a degreaser. Rinse and let dry.

4. Prime with gray primer spray paint and let dry.

5. Paint with high quality exterior latex inside and out.  Use bright, light colors, as the planter will be very hot if painted in a darker shade.   Let dry.

6. Apply second coat exterior latex. Let dry.

7. Create artwork on rice paper by drawing an image with an ink pen or fabric marker and then paint using Dye-Na-Flow dyes.  After the art is dry, cut out the art image.  

8. Decoupage the art onto the tire using Golden Gel Medium Soft Gloss. Let dry.

9. Spray seal tire with acrylic gloss sealant. Let dry.

10. Staple chicken wire fencing to inside hole on tire.

11. Place planter in yard and add mulch.

12. Add a bag of potting soil.

13. Flowering plants are added.

14. Mulch around plants and water.

15. Display until fall and place in storage before hard freeze.