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

1. A Great Good Thing: A Story of a Man, a Mission, and the Making of a Movement By Regina Holliday

2. 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.

3. Where does a story begin and where does it end? PhD Father Husband Professor of Film Video Clerk Writer Son Regina Sue McCanless Wife Mother Daughter Sales Clerk Art Teacher Caregiver Widow Artist Poet Frederick Allen Holliday II, PhD

4. 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, Storieswould connect them.

5. 14 years later, Fred would meet Regina on stage in a scenic painting class atOklahoma State University. We would talk of Stephen King’s Dark Tower. Wewould fall in love.

6. Tides and tears, days and years, And new characters would enter Our personal story.

7. 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.

8. 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’s IEP Binder

9. Fred was happy with his new job. But he was very tired, He went to the doctor and was diagnosed with hypertension.

10. During the months of January, February and March of 2009, Fred was in constant pain. He visited two Emergency Departments and was sent home. He visited his Doctor’s office many times. He was given pain pills each time. Often he posted a Facebook status relating to his health

11. 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.

12. Fred was hospitalized on March 25th 2009 for the administration of tests. On March 27th, he was told while alone that he 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.

13. 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.”

14. 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.

15. 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 5-1-09 Under the Dome is published Nov. 2009 “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.

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

17. 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…

18. Why did we get more help and answers from Social Media than from our local hospital ? 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.

19. Facebook as a Caring Bridge

20. 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

21. 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

22. On Tuesday, October 20th 2009 We dedicated the Mural while singing songs from Buffy the Vampire Slayer Musical “Once More With Feeling.” When ended the night singing our question, “Where do we go from here?”

23. The world of HCAHPS meets the little girl in me.

24. Welcome to the Walking Gallery. We bring the Patient Voice. We bring new eyes and new vision. We walk and spread the word.

25. How would I change things as an artist? I would wear the title given to me As 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.”

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

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

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

29. 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.

30. 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.

31. “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 beginning And I am not sure it ever ends.