the great good thing

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t Good Thing: of a Man, a Mission, and the Making of a Mov By Regina Holliday

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This is my presentation for Sharp Health Care on October 11-12, 2011.

TRANSCRIPT

Page 1: The Great Good Thing

A Great Good Thing:A Story of a Man, a Mission, and the Making of a Movement

By Regina Holliday

Page 2: The Great Good Thing

What is your favorite story?My favorite favorite fairy tale is

Mother Hulda.In this tale, a girl falls into a well And performs many good deeds.

One of my favorite books is

“The Great Good Thing”In that tale, a girl falls into a well of memories.

Page 3: The Great Good Thing

WifeMotherDaughterSales ClerkArt TeacherCaregiverWidowArtistPoet

PhD Father Husband Professor of Film Video Clerk Writer Son

Where does a story begin and where does it end?

Frederick Allen Holliday II, PhD

Regina Sue McCanless

Page 4: The Great Good Thing

In 1978, there was a little boy named Freddie who lived in Maryland.

And many miles away in Oklahoma, lived a little girl named Regina.

And though miles would separate them,Stories would connect them.

Page 5: The Great Good Thing

14 years later, Fred would meet Regina on stage in a scenic painting class at Oklahoma State University.

We would talk of Stephen King’s Dark Tower.

We would fall in love.

Page 6: The Great Good Thing

Tides and tears,days and years,

And new characters would enter Our personal story.

Page 7: The Great Good Thing

In September 0f 2001, as a nation recovered and people remembered,I painted my first mural on the streets of Washington, DC.

“Children Reading a Book.” It seemed safe. It was pretty. But there is always more to a story.

Page 8: The Great Good Thing

Everything we ever wanted… Resolutions January 2008: 1. Get Medical Insurance for the whole family 2. Get little Freddie into a special needs school 3. Fred gets a job in his field 4. Spend more time together as a family 5. Get a two bedroom apartment

Freddie’sIEP Binder

Page 9: The Great Good Thing

Fred was happy with his new job.

But he was very tired,

He went to the doctor and was diagnosed with hypertension.

Page 10: The Great Good Thing

During the months of

January, February and March of 2009, Fred was in constant pain. He visited two Emergency Departmentsand was sent home.He visited his Doctor’s officemany times.

He was given pain pills each time.

Often he posted a Facebook status relating to his health

Page 11: The Great Good Thing

On Friday March 13th, We went to the ER because Fred was in so much pain .

The waiting room was filled with stained glass windows and lovely blue couches.

And Daddy waited, Mommy waited, Freddie waited and Isaac waited.

And after 3 hours of waiting,they sent us home with pain medication.

Page 12: The Great Good Thing

Fred was hospitalized on March 25th 2009 for the administration of tests.

On March 27th, he was told while alone thathe had “tumors and growths.”

He was scared and confused and did not understand.

His oncologist left town for the next four days to a medical conference and was not reachable by cell phone.

Page 13: The Great Good Thing

I asked everyone involved in Fred’s care about information on his case. What was the diagnosis? What were the treatment options? Would he get a pain consult?

For asking questions, Fred’s oncologist called me “Little Miss A-type personality.”

Page 14: The Great Good Thing

This is my husband’s medical record.

I was told it would cost

73 Cents

per page

And we would have to wait 21 days to get a copy.

Page 15: The Great Good Thing

“She must not have tried very hard to get the record….”Comparing access to an unpublished book by

Stephen King to accessing the

Electronic Medical Record while hospitalized.

Need the book: Under the Dome

Regina emails book buyer 4-3-09

Buyer emails book rep. 4-3-09

Rep emails publisher 4-3-09

Publisher gets approval from Stephen King 4-3-09

Publisher mails it. Arrives 4-7-09

Fred reads book 4-7-09 through 5-1-09Under the Dome is published Nov. 2009

Page 16: The Great Good Thing

“During this hospital stay, how often was your pain well controlled?”

Page 17: The Great Good Thing

When I eventually got a copy of Fred’s record and it was instrumental in guiding Fred’s care. I used this information to create an easy to understand

“face-sheet.”

This was the “Medical Facts Mural.” Then I painted it on a wall in Pumpernickel’s Deli in Washington, DC for all of our neighbors to see…

Page 18: The Great Good Thing

I got on Twitter on May 3rd to find Christine Kraft and e-Patient Dave to talk to them about kidney cancer.

Within one day were in email contact and then spoke on the phone.

By ten o’clock May 4th 2009, I was talking on the phone with Dave’s Oncologist about my husband’s cancer.

Why did we get more help and answers from

Social Media than from our local hospital ?

Page 19: The Great Good Thing

Facebookas a Caring Bridge

Page 20: The Great Good Thing

We fulfilled our final 2008 resolution on June 11th 2009.

We moved into a two bedroom apartment so I could care for Fred in home hospice.

He died six days later on June 17th, 2009

Page 21: The Great Good Thing

Painting Advocacy meets

Social Media

Street art is truly the first global art movement fuelled by the Internet. –Marc and Sara Schiller, Wooster Collective, 2010

Page 22: The Great Good Thing

On Tuesday, October 20th 2009We dedicated the Mural while singing songs from Buffy the Vampire SlayerMusical “Once More With Feeling.”

When ended the night singing our question,

“Where do we go from here?”

Page 23: The Great Good Thing

The world of HCAHPS meets the little girl in me.

Page 24: The Great Good Thing

We bring the Patient Voice. We bring new eyes and new vision.We walk and spread the word.

Welcome to the Walking Gallery.

Page 25: The Great Good Thing

How would I change things as an artist?

I would wear the title given to meAs a red badge of courage,

As a Scarlet Letter.I would speak out across the nation.Sometimes, I would be the only patient speaker in the room.

I would explain how patients and caregivers feel in the hospital, and I would do that with

Art with a capital “A.”

Page 26: The Great Good Thing

When Walkers walk, the story lives and memories never die.

Page 27: The Great Good Thing

A pre-school student can learnhow to care for others,If that is what he is taught.

Page 28: The Great Good Thing

And children, once silent, can march within a movement.

Page 29: The Great Good Thing

I am glad that the child in me can tell the child in them,

Sometimes we must right on walls, Paint on clothes, and mount the stage.

Page 30: The Great Good Thing

A painting for my Mother-in-law Joan Holliday:

“The Best of Us.”

Within our minds and memories, We are the heroes of the tale.

All those we have loved and lost populate our dreams and stories.

Page 31: The Great Good Thing

“The Great Good Thing” Is remembering the story.

And telling it to others.

Let Patients Speak,Let Walkers Walk,Let Artists Paint,

What is the beginning and ending of a story?

Well, it begins at the beginningAnd I am not sure it ever ends.