Search This Blog

Showing posts with label Patient Story. Show all posts
Showing posts with label Patient Story. Show all posts

Wednesday, March 28, 2012

Wind of Change

I met Amy Cueva almost three years ago. I was presenting my first speech at a health care conference in Washington, DC. MY friend Ted Eytan, MD asked me to join his panel presenting a patient view in medical care. Another friend, Cindy Throop, kindly helped me with the power point, as I had never created one before. During my short speech I poured out my soul before a room containing more empty chairs than filled ones.

Amy cried that day.

She walked over and embraced me. Then she told me that she was working at the intersection of health and design. Over the years she kept in contact via Twitter and occasionally I would participate in a in a conference call with her and her team at MadPow. Recently, she asked me to attend her annual conference: Health Experience Design 2012 or #HXDconf as it was known on twitter. I would paint and speak.

This is the painting I created yesterday "Wind of Change." It was inspired by several speakers who presented in Grand Ballroom A.

Amy with the painting

Typically, when I paint at a conference I will either be in the back of the room by the exit door next to the camera crew or towards the front of the room by the stage. #HXDconf was not the typical conference.

Apparently, the hosting hotel had just installed new carpet and did not want me to paint at all. The MadPow team fought for a month for my inclusion. They reached a compromise by placing me on tile floor covered with protective plastic approximately 200 feet away from the conference space. I looked at the placement and said it would not work, as I would not be able to hear the speakers. The hotel staff strung cable along the hall to connect me to the audio feed.

That was the best they could do and I began to paint.

Amy started off the day with a strong welcome explaining her drive to create a better health experience for us all. She then made a statement that defined this painting: “Technology and design should be the wind at your back, not your face."

Amy Cueva


I then began painting Amy using the elongated form often reserved for depicting the divine. She stands firm with a determined face, the wind at her back and a banner in her hand depicting her quote about technology. In the background the sky roils with dark clouds driven by the winds of change. She stands tall in the middle of the path of technology. Her shadow looms long and exists beyond the page, for that which is done today shall repercussions for many tomorrows. 

Regina and Robyn


To her left is the next speaker Robyn O'Brien who told us about Allergykids and the Unhealthy Truth. Robyn was just a regular mom and food analyst until her child became allergic to certain foods. Now she is a righteous warrior in the battle against unhealthy foods containing pesticides and growth hormones. She is looking for other advocates who will join her team. In one hand she holds an apple representing the healthy food we need to eat. This apple also represents the knowledge that we must attain about what exactly has been done to our food supply. Her other hand reaches out to Amy, as Robyn would like to meet others also determined to create change.

Patient in the room


To Amy's right is Tim Kieschsnick whose speech was entitled Data are People too- Visualizing the new Health Care Reform Consumer. He focused on the outreach that Kaiser Permanente is doing to provide care for American's previously uninsured. He asked for a show of hands of the uninsured attendees.  He was pointing out that the uninsured in the room may be sitting next to you, or they may be you. I depicted Tim as the patient in the room. His back is to the viewer, his gown gapes. He is anonymous, except for the mirror in his hand that allows us a glimpse at the reality of the uninsured.

Alex Drane


To Tim's right stands Alex Drane, as sexy as her speech: Talk Health to me Baby. She pointed out that health care spends relatively no money in marketing itself to consumers, while tobacco and soda spend quite a bit. When health care does market itself, it is usually with un-sexy, vanilla, boilerplate imagery. So Alex stands provocatively within this painting baring some inner thigh, wearing paten leather boots that reach her kneecaps. In one hand she holds a plate with a single marshmallow, referencing the marshmallow experiment on self-restraint that she referenced in her speech. In the other hand, she holds a magnifying glass up towards the patient, representing all the magnifiers that are affecting the patient's health.   
To the far left of the painting I stand in my Little Miss a-Type personality Walking Gallery jacket. My hair whips behind me and my arms are upraised. I am asking you to join me. Become a paintbrush warrior. As Don Fluckinger described me on twitter, "preaching HIT fire and brimstone."  As my speech continues my volume increases and makes its way into ballroom B where some attendees hear enough to want to leave that session and come to mine. I end with a call to action: invite patients to conferences and thereby artists and poets as well. Embrace true disruption of the model of medicine that does not include the patient voice and occupy healthcare.

Todd Park


Finally to the far right, Todd Park marches and beats the HIT drum. His speech received a standing ovation: Unleashing The Power of Open Data and Innovation to Improve Health. I was told he jumped on the stage, he vibrated with energy and spoke of data liberation with the joy of a true believer. He then closed his speech with the story of his daughter's open-heart surgery.

That is the story of Wind of Change. And in case you ever wondered if God has a sense of humor, the wind of a cold Boston day blew at me throughout creating this entire composition. I was painting next to a building exit.  At one point the wind was so harsh that it broke the pneumatic hinge on the outer door. In addition to being very cold, I would have to hold canvas in place each time the door was opened or it would be blown off the easel.

The distance between us.
As the conference day ended, I continued painting far away from the milling crowd.  A few braves souls crossed to long expanse and met me at the easel and we spoke of art and design. Juhan Sonin was the most apoplectic in his dismay.  "This was a design conference," he said. "How could a design conference accept this poor placement of an artist by a windy exit." I commiserated with him and said, it is okay it reminds me how it feels to be a patient: alone and ostracized with the wind in my face. I paint beauty from tragedy and grow stronger through adversity.

I am buoyed, and not bowed, by the winds of change.
            
Wind of Change

Monday, December 19, 2011

A 2011 Christmas Letter


I have a few friends and family who send newsletters every Christmas. I look forward to these missives with great joy. In the days before Facebook, it was the only way to stay abreast of the life events of distant friends. In these days of instant messaging and social media, I find them still a wonderful source of information and something more. A Christmas letter is a retelling of one year in the life of a family and it is amazing to see 365 days of important events unfold within a few sparse paragraphs. I love to see the march of time as told by a family matriarch or patriarch. I love to read the words of my late husband’s best friend from college, even if his news is sad to hear.

So, this year I decided to write a Christmas letter. Whether you read this on a page of paper or via backlit screen, know that I am happy to share our life with you this joyous season.

“How are the boys?” I hear this question wherever I go. I am glad to say, they are doing well.

The Holliday Family 2011

Freddie Holliday III is 13 years old and he grew over the summer and is now almost as tall as his father. His voice changed and he quite likes his new adult voice. He is now in 7th Grade at Ivymount School in Silver Spring, Maryland. He got an award last spring in his science class for best presentation on his science fair experiment. He collected data about logo recognition rates among preschool children who watch television. It was a cool project.

Isaac Holliday is a five-year-old in kindergarten at Murch Elementary in Washington DC. He is a joyous child and recently had a great deal of fun playing the donkey in the Christmas pageant. He has been struggling with learning to read. We have been very blessed to have my boyfriend-Ben Merrion tutor Isaac as Ben works in the adult literacy department at MLK, Jr. Library and is a wonderful teacher.

Speaking of Ben, we have been dating for over a year and this summer Ben made his first trip to Oklahoma to visit my family. He was such an amazing help in guiding the children through the airport during the trip. I also got to meet Ben’s Mother and sister this fall and we had a grand time.

We also have been blessed to meet the amazing Kait B. Roe. She is patient advocate too. She has recently moved to DC and has agreed to help with night-sitting when I am out of town speaking. We are overjoyed to have her as part of our life.

I am so glad Kait is here to help because I travel a lot to speak and paint about the patient view. I owe a great deal of thanks to everyone who helped out in 2011 while I was gone. So thank you to Ben, Kait, Joan Holliday, Courtney Mazza, Megan Michell, Eleanor Franc, Emily Stewart, Liam Kemp, Pete Wright, Cindy Throop, Shoshannah Kantor, Nora Reno, Miriam Cutelis and Robin McGrew.

This was the year I traveled nationally to speak about our family medical story and the tragedy of Fred’s medical care. I delivered over 20 speeches this year visiting Florida, Oklahoma, Illinois, Missouri, Maryland, Tennessee, Pennsylvania, California, Oregon, Texas and Puerto Rico. Most of the venues that ask me to speak also allowed me to paint onsite. It was amazing to set up in the back of grand ballrooms and paint the words spoken at these august events filtering the images through the patient view. Most venues asked me to deliver a second speech at the conclusion of the conferences explaining the paintings created over the days of the conference.

In June of this year Charles Denham, MD offered me a one year fellowship with TMIT (Texas Medical Institute of Technology). As part of the process of being a fellow, he asked me what TMIT could do to advance patient advocacy. I mentioned that conference attendees wrote to me after my speeches telling me how much the patient story was affecting their lives and profession. They were asking for other speakers like me. While within patient communities people who wished to speak often had no way of becoming connected to facilities that needed patient speakers. So when Chuck asked me his question, I responded that we needed a patient speaker’s bureau. For the last six months Chuck and the great team at TMIT have been doing exactly that.

We now have a site called SpeakerLink.org and over sixty speakers have completed profiles and many providers have logged on to find likely speakers. Thank God that Chuck Denham and the TMIT team met me a little over a year ago. SpeakerLink.org is such a blessing!

Another amazing creation in 2011 was The Walking Gallery. In April, I attended the opening of a new Kaiser Permanente facility in DC called the KP Center for Total Health. It was a lovely place: a medical facility lit like a gallery. I immediately wanted to have a gallery show in the space. But we would not pound a single nail. All the art would be worn on the backs of business suit jackets and lab coats. Ted Eytan, MD with KP thought it was a great idea and the KP team thought the proposal over and by the end of the month we had approval. At the end of April, I and five other artists began to paint. On the night of June 7th 54 people walked with fine art paintings depicting patient stories on their backs. It was an amazing and sacred experience.

2011 The Walking Gallery 2650

At this point there are 107 jackets in the Walking Gallery and the movement grows larger each day you can view the entire gallery at Welcome to The Walking Gallery - Regina Holliday's Medical ... Those that walk in their jackets have attended events and medical conferences throughout the United States and in a great deal of Europe. We now have walkers on five continents spreading the power of the patient story.

So that was this year. We are well, happy and so very blessed. And I hope 2012 is another wonderful year filled with advocacy and loving friends. God bless you as you each walk on your own path and I hope to see you along the way.

Love,
Regina, Freddie and Isaac.
2011