Painting a Gift for Alex Drane

I was at a dinner hosted by Mathew Holt and Health 2.0 in June of 2010, when I met Alexandra Drane. She was seated near me. I first saw her from behind. She was a slight woman in a light jacket. Her hair was long with sun kissed streaks. Matthew introduced us and as she spun around I was stunned by the presence of Alex. She was full of vitality and light. Within moments of meeting she told me about her company and her causes. Alexandra founded Eliza. Eliza is a company that uses computer technology and voice recognition software to help people to remember to take their meds and to schedule important medical appointments. She also told me the story of her sister-in-law Za. Za was diagnosed with cancer at the age of 32. She died 7 months later. She spent the last two months of her life in the hospital. She did not want to die hospitalized. Alex spent months fighting the system to try to get Za the best care. In the end, Za’s brother fought the hospital to help Za go home so she could spend her final days with her two-year-old daughter. Finally, Za got to go home and hold her daughter before she died. After this experience Alex, created Engage with Grace. It was a simple concept that involved asking important questions on a power-point slide. What if we showed one slide at conferences that asked five different questions about our end-of-life desires? What if we all took time to ask these questions to our friends and family? Could we have a better experience at the end of our lives?

The next day was Health 2.0 goes to Washington and I had a chance to see Alex speak. She was a dynamic speaker and she did a wonderful presentation of Eliza. I had a chance to talk with her that day and she said at some point she would like to commission a painting. We parted ways and time passed before I would see Alex again.

In October of 2010, I saw Alex at Health 2.0. She would tell me, once again, that she would like a painting. Perhaps a jacket like her friend Roni Zeiger had commissioned, or perhaps a painting for her father. We parted ways and agreed I would soon paint for her.

While attending Health Camp DC in November, Alex was emailing me about the painting. I answered her questions while listening to an unconference presentation. I was seated near two Eliza employees. I switched sessions and as the talk turned to drug compliance, I noticed that no one in my session mentioned the benefits of Eliza. I asked “Where are the Eliza folks?” And I as texted about the power of medical paintings with Alex, I spoke of the power of Eliza before a diverse group of medical professionals. Soon one of the Eliza staff came in and took over describing the system, and Alex told me the painting would be for her Father.

Later in November, Alex called me to describe her father. I was on jury duty at the time. During our short lunch recess, I stayed in the deliberation room and spoke with Alex about her father Douglas Drane. She described him as a loving, caring and energetic man devoted to many elements of alternative medicine… and he loved Dragons. Then the idea came to me, it would not be one painting, it would be two. This would be a juxtaposition piece that focused on balance.

This is “West meets East.” It consists of two 18x24 canvases. The background field is a deep bluish purple. Within this field, swirls of white form an infinity loop.

The left canvas focuses on elements in Western medicine, so the swirls of white on this side are suffused with pills and tablets. These are the drugs that can save a life or prolong it. A doctor looms over the patient in this scene. A look of concern is on his face as he provides chest compressions to our unconscious patient. He is trying desperately to save a life. The top half of the Doctors head is cut off in the frame. Is this case of a poorly framed shot? Or is this mechanical response on the part of the medical professional? Is this action without thought? The patient lays with her head dangling and her face serene. Her breasts are gone and are replaced with a heart shaped cavity in her chest. A stylized version of Alex Drane stares out at the viewer to the right of the doctor. Her hand is twisted and placed with the heart shaped cavity. Protruding from the skin of Alex’s arm is a child’s slide. Here is the One Slide Project. Here are the end-of-life questions that you should share with your family. Does this patient want to be brought back? Is this what she wanted at the end of her life? The patient’s body is supported by a western-style dragon. This dragon is reptilian and cold. It is green and blue. It is the color of money. It stands inside its lair; the hoarded loot within its claws are files upon files of medical records. Each record says EMR, EMR, EMR; and this dragon does not want to share its treasure. It is breathing a small tongue of flame preparing to destroy all that it cannot keep as its own.

In the right canvas the infinity swirls flow into an Australian aboriginal dot motif. This is dream time. This is where the soul meets the body. A massage therapist stands above our patient and rubs her back. She is serene and calm. Acupuncture needles are arrayed upon her face and an elongated needle upon her back forms a stylized caduceus. The wings of the caduceus are formed by the handprints of a child. The caduceus represents medicine, but also warns against false treatment. For not all alternative therapies are helpful, and some programs are more about thievery and profits, then health and healing. Our patient’s head is surrounded by a strong aura. Above this aura a Rosary is superimposed on the infinite sky. Is it Rosary beads and a Cross? Or is Orion and a compass rose? Where does faith reside within medicine and must it be disguised? Beside our patient’s face a bamboo shoot heroically grows out of our infinite swirls. Where is nature within medicine and how can green and growing things soothe the soul? This patient is supported by an eastern-style dragon. He is the red of fire, energy and passion. This dragon does not need to breathe flame, for he is flame itself. He is staring at his western counterpart with concern. He has no wish to destroy but desires to work in concert with the west.

These two paintings are meant to be shown together, for they are about balance. Patients will get the best care when we embrace the treatment path that is best for each patient. That means asking questions, answering questions and sharing information. Neither side is better than the other, but each part makes the whole.

May The Force Be With Us

A few years ago, I had the pleasure of attending an adult Sunday School class with my late husband Fred and my cousin Phillip Roggow. Phillip is the son of a Lutheran pastor, and he knows his way around a Bible. The class began simply enough, and everyone was having a great time, until the instructor decided to begin attacking the merits of the Star Wars saga. Now, if the instructor had just attacked The Phantom Menace, Attack of the Clones, and Revenge of the Sith, Fred would have probably cheered along. He loved the first Star Wars trilogy but considered many aspects of the prequels grave mistakes. Fred had seen the original Star Wars in theatre over 200 times and could quote the entire film from memory. Indeed, Fred was so inspired by Star Wars it was the reason he devoted his life to film study. So this teacher was making a very dangerous decision in attacking the classic Star Wars films. And to make matters worse, he told us those films were… evil. The room quickly erupted into two camps: those for and those against Star Wars. We then began a deep discussion about the theological depth of Star Wars in general and about Darth Vader in particular.

We focused a great deal of our discussion on the character arc of Darth Vader. The visage of Darth Vader is often used to symbolize great evil within our pop culture. But this ignores the ultimate end of this character’s arc. In the end, Darth Vader reemerges as Anakin Skywalker, destroying the evil emperor and saving his son Luke. Darth Vader dies a good man. He is a redemption story. His arc reminds us that no matter how bad life gets, we can make a choice to do good instead of evil.

Recently, as I began working on the format of Social Camp part II, I thought of this long ago discussion. I thought about how pop culture affects our dialog and storytelling. I thought about how things that may seem to have nothing in common, really do. I had been contacting folks about whether they could present speeches on January 21, 2011 at Ignite Speech night at Social Justice Camp. I explained the second weekend of Social Justice Camp would have a focus on health and social justice. I was asking a diverse group of people from various backgrounds to speak. Many were concerned that they knew very little about social justice or very little about health, but I explained that they might not realize it, but they knew more than they realized. To paraphrase Obi-Wan Kenobi, social justice is a lot like the Force: it is around and in us; it affects what we do and binds us together.

Not long ago I posted on Twitter an invitation to attend Social Justice Camp. I wrote: "Social Justice Camp II: The Empowered Are Back." I was tweeting a play on words reminding people about Star Wars: The Empire Strikes Back. After thinking about it for a few days, I thought I should create a painting/poster promoting Social Justice Camp. I spoke about this idea with Social Justice camp planners: Kelli Shewmaker, Aaron Ginzoi, and Ben Merrion. We agreed that it would be an interesting visual, and I began contacting participants about including them in the painting.

The painting combines elements of several promotional Empire Strikes Back posters from 1980 and 1997. I decided to focus on The Empire Strikes Back, as it is a sequel, just as this year’s event is a sequel of last year’s event. I also focused on Empire because it depicts a challenging time. In Empire, the struggle is long and cold and good does not always triumph. In Empire, you may train for months and not succeed, you may be betrayed by those once considered friends, and you may find yourself frozen and unable to help the ones you love.

To paraphrase a description once written by Kelli Shewmaker: Social Justice Camp is a lot like a retreat and renewal for burnt-out activists. The cold of January in DC is not so very different from the chilly atmosphere of the ice planet Hoth. And as we huddle together at MLK Jr. Library or St. Paul’s Lutheran Church, we are slowly creating a very important Rebel Alliance. One of the most powerful things about Social Justice Camp was the network of activists that came together. But the most important thing was the sense of energy and renewal that we attained through meeting with each other.

To the far left of the painting we see the faces of Ben Merrion, Chaitra Shenoy and Shannon Lynberg with Holla Back DC. Chai and Shannon seem so happy as they help other women walk confidently down the street. Their social advocacy addresses street harassment, and they have done great work. Ben seems concerned. He is juggling many causes. He is supportive of Hollaback DC, DC Learns, and Social Justice Camp, and he works daily to empower citizens of the District.

Beside this trio is Ladd Everitt as C3P0. I have known Ladd for many years as he went to school at American University at the same time as Fred. He currently is the Director of Communication at the Coalition to Stop Gun Violence and will present on January 21. Above Ladd stands Carolyn Capern. Carolyn was one of Fred’s students at AU and will be presenting as well. She is involved in the social justice group in the United Methodist Student Association. Above her stands Joni Podschun who is very active with Save Our Safety Net in DC. She appears to be creating a web or net with hands in the painting.

To the right of these figures, sits Ananda Leeke. She sits in a Yoga pose. Or is it a Yoda pose? Smiling, she knows the power of meditation and social networks and her work on Digital Sisterhood combines them both.

To the far right, Dr. Ted Eytan, a director at Kaiser Permanente, looks out of the frame. He is new to the world of Social Justice but willing to learn and willing to bring his considerable experience in medicine and health information technology to bear. Above Ted is the famous @cyberslate from Twitter, also known as Marie-Michelle Strah. She will be representing Health 2.0 DC and Health IT at Aquilent during the Ignite session. Below Ted is Howard Liebers. When Howard isn’t busy at his day job as Senior Policy Advisor at DCPCA, Howard is helping people with rare diseases connect with needed resources at his non-profit Marble Road. To the left of Howard is Aaron Ginoza. Aaron Ginoza was one of the organizers of last year’s Social Justice Camp and is very interested in the spiritual in relation to justice, so it is quite fitting that he is wearing a Jedi’s robe. Below Aaron is Kelli Shewmaker; she too is instrumental in the planning and execution of Social Justice Camp. She looks to the side quite concerned because Kelli is watching all the details and working toward creating balance in the Force. Below Kelli sits David Hale. David works at NIH and is part of the Pillbox Project. He sits in his Jedi robes strumming a ukulele. This may be a prophesy of things to come, for I have it on good authority that David and his ukulele will be present on the 21.

Toward the center of the piece is a profile painting of Alex Priest as he stares into the distance. Alex is finishing up a degree at American University, when he is not busy being a social media guru. Beside Alex is Princess Leia... I mean, Amanda Michelle Jones. Amanda is very active in social media and founded Out of the Boat Ministries. Recently, Amanda was quite ill, and the one piece of good news she had received during her suffering was her inclusion in this painting as such an iconic character.

In the middle of this painting are three images painted in blue.

To the far left, superimposed over the title, The Empowered Are Back, is the image of a fire. This is the logo of Social Justice Camp. This is the igniting fire, the New Hope. In the center is Lady Justice wielding a caduceus sword and unbalanced scales. On her feet. you see the hint of a running shoe. This is for Girls Gotta Run, an organization that helps Ethiopian girls become runners and thereby have a better life. Ashley Griffith will represent this organization that helps these young girls. The figure of Lady Justice represents our current world where justice often is not just, and health care is not for all. To the far right is Casey Quinlan. She seems to be the sky and space itself. She surrounds the figures in the scene. Do you know Mighty Casey? She wrote Cancer for Christmas. She was diagnosed with breast cancer five days before Christmas in 2007, and her book is the saga of her journey in medicine. And like so many who have been touched by tragedy in healthcare, she works daily to improve communication between practitioners and patients. She is our Return of the Jedi. She is Social Justice. She is the regular person, who after suffering herself devotes her life to helping others.

So this is Social Justice Camp: The Empowered Are Back, and I hope you can see it in person at the event. On the evening of the 21st after the ignite speeches, we will auction this piece off to raise funds to give to St. Paul's Lutheran Church for their gracious decision to allow us to use their space to help spread justice for all.

I find it very fitting that an argument about Star Wars that started in a Lutheran Church basement shall end in a Lutheran Church basement... and may the Force be with you all.

Social Justice Camp II: On Water Ripples and Spider Webs

Social Justice Camp II: The Empowered Are Back is less than a month away. It will be on two weekends. It will have two locations. These two weekends will bookend and support the work of some amazing local activists and artists. On January 15 and 16, the traditional social justice group will meet. On January 21, we will collide worlds, and social justice will meet health at 7:30 pm at St. Paul’s Lutheran Church, located at 4900 Connecticut Avenue. There will be an ignite speech session. These speeches will only be five minutes long and will ignite the passions of the diverse audience. The next day, on January 22, we will start at 10:00 am in an unconference and do many breakout sessions about health and social justice topics until 3:00. We shall build an amazing web of advocacy.

Have you ever truly stared at a spider web? Have you seen it glistening with dew at sunrise? It is a thing of beauty. It is amazing that such a small creature could create something so immense, so beautiful, and so connected. The small spider may seem to work alone on this, dutifully extruding the silk that shall become the web; but all would fail without supports, without connections. Would there be a web without the branch, the shed, or the fencepost to provide a purchase? The web does not exist without a network of support. The web is an amazing tool; it catches sticky thoughts and activates people, and it grows.

I was invited to attend Health Camp DC by Mark Scrimshire (he is part of my Twitter web) on November 12, 2010. It was a wonderful event. It was hosted in an unconference format and the participants were from diverse health and tech backgrounds. I went to several breakout sessions, and in each session people began to focus on what health services were available to the poor, underrepresented, or disadvantaged within our community. As the conversation went further, I realized most of the people had never worked with the activist community in DC. They had few contacts with those people already making a difference in the public health within community. I was amazed. I asked if anyone had attended Social Justice Camp. I learned that only one attendee, Cindy Throop, had. I decided at that moment that Social Justice Camp must meet the Health 2.0 movement.

What is Social Justice Camp? It consists of an ignite session of short speeches and an unconference. Last year, I was invited to attend Social Justice Camp DC on MLK weekend by Aaron Ginoza. He read about my work on Twitter and thought I would be a good addition to the ignite session of Social Justice Camp. I went with my friend Cindy Throop. It was an amazing night! I met so many empowered and energized activists like Greg Woods and Kelli Shewmaker. They were so inspiring. Then sixteen people gave rapid fire five minute speeches with twenty slides, and I got a very fast immersion education about public health, homeless causes and the power of social media in Washington DC.

I left that meeting energized and made so many wonderful connections that would dramatically affect my life in 2010.

I met Chai Shenoy and Shannon Lynberg with Hollaback DC. They would inform me of the dangerous impact of sexual harassment on the citizens of DC. I would agree to work with them on a mural project, and at this point we are waiting for a wall on which to paint our vision. I would present with them at a Chispa event and blog talk radio.

I would meet Joni Podschun and Greg Bloom with the Save Our Safety Net campaign. They would invite me at attend city council meetings to show support for keeping city services intact for our poorest citizens. They created a branding campaign where our council leaders who supported the safety net were depicted as super heroes. So I painted a large banner for them of all the council members who had supported the concept. We then stood arm in arm around the Wilson Building supporting the safety net and holding up the banner.

Due to my work with Greg and Joni, I would talk with Lance Kramer, who would ask me to work on the healthy food in DC schools campaign. Lance and I came up with a great arts action but would not get to complete it due to a city council decision, but Lance would contact me over the summer to place a show of my advocacy art in the local coffee shop Modern Times in the Politics and Prose bookstore.

I met Eric Sheptock at Social Justice Camp. He was recently profiled in The Washington Post, and would learn firsthand of his homeless advocacy while being himself homeless. He would become a good friend on Facebook and would inspire me to host several events at my church St. Paul’s, that would fund our homeless shelter and homeless causes in DC.

In February, I would begin working with the 6^th, 7^th and 8^th grade artists at Deal Middle School on a series of six social justice murals. I would get to talk and work with fifty youths as they focused on, discussed, and then painted about social justice issues throughout the globe. These six paintings are on permanent display at the school. They look so pretty when you just glance at them, but if you take a moment and truly look at them, you can see the sadness they convey.

I would meet Amanda Jones from Out of The Boat Ministries, and she would alert me to the homeless youth who must couch surf from home to home as they do not have a safe place to live. Then during the blizzard in February, I would see a tweet from Amanda saying that she would need a place to stay once she came home via Union Station as none of the over-ground Metro stations were working. I replied that I was only five blocks from Van Ness/UDC, so she trudged over four foot drifts to come to spend the night. She played for hours with Isaac and filled our house with joy as she couch-surfed into our lives. In March, she would rally with me for patient’s rights. In May, she would come back to help me run a rummage sale at St. Paul’s Lutheran to help homeless ministries.

I would meet Ben Merrion who works with the non-profit DC Learns adult literacy outreach at MLK Library. I would find out that Ben was on the board of Hollaback DC. Ben too would rally with me in March for patients' rights. He would also attend my gallery show at Clinovations in July even though it meant missing a church choir practice. I would find out that in addition to being an activist, he was as geeky as the rest of my friends and family. He would come over and watch long Doctor Who marathons with Will Kemp, Michael Wenthe, Rebecca Boggs, and our little family. He helped bring back joy and laughter to my boys and me, and I can happily say that we both have Facebook profiles that state we are in a relationship. I think of the "trouble" we can cause together.

So, I can rightly say Social Justice Camp rocked my world. I made so many contacts that opened my eyes and sent me into new directions of thought. So, I would like all my health friends to meet all my activist friends so we can create some great ripples together. That is why I have teamed up with Social Justice Camp.

I would like to throw a stone in the water and watch the ripples grow. I would like to see what happens when we get such amazing people together and create an intricate web. I hope you can join me…. You can register to attend at here.

Praying with Chuck Denham

I have told you before that as a child I worked at a local flea market in Sapulpa, Oklahoma. It was hard, dirty work, and it made me despise at a very young age any passing fad or craze. You see, every couple years after a fad died the over-abundance of certain products would crowd our stall and be almost impossible to sell. I, to this day, cannot stand termite shoes, Rubik’s cubes or feather earrings. But I truly disliked the many mugs, wall hangings, and decorative pillows emblazoned with the words to “Footprints in the Sand.” As a child, I found distasteful the hokey 1970's imagery of the beach sand and the disappearing footprints next to text written in mass-produced faux calligraphy. I am sure you are familiar with the tale. In it a man walks with God along a beach as the memories of his life pass him by. He notices in his darkest times there is only one set of footprints. He questions God, “Why did you leave me at my saddest moments?” God responds that when there was only one set of footprints that was when God carried him.

As a child, I really did not like “Footprints in the Sand.” In many of the pictures, it seemed like Jesus was carrying the dead- their arms limp and dangling. I did not want to look at this, and I did not want to be carried. Perhaps, as I was young, that memory of being carried, that loss of control or will was too fresh, so I could not accept this image. When I was a child, I spoke as a child; I understood as a child, I thought as a child…

Now, I am often asked "How do you do all that you do? How do you have the energy to balance teaching art, advocacy, blogging, giving speeches, and painting?" Well, I do not do walk alone. I pray, and God gives me the energy to sustain this life.

I remember one point when Fred was in the hospital, when all things within this life seemed so very dark. I remember praying for the peace of God, that it fill me and uplift me. And it did. I remember the moment. I was walking through the hospital cafeteria praying silently when I was filled with the love and light of God. My face was lit with an inner peace and even the hospital workers remarked upon my visage. The footprints artist had gotten it all wrong: when God carries you, you float.

Time has passed, and I no longer burn with this inner fire. I smolder. The journey is long, and I know the spirit is still within. I listen carefully and watch for “God moments.” My sister Esther and I call those moments of divine direction that happen with our lives “God moments.” I listen, I am open to direction, and I know the freedom of putting one’s life in God’s hands. So when I was invited to speak at 2010 CMS QualityNet Conference on December 2 in Baltimore, I said yes.

And that is how I met Chuck Denham.

Do you know Dr. Charles Denham? He is an amazing man. He worked with many cancer patients over the years as he has a background in oncology. He is founder and Chairman of TMIT (Texas Medical Institute of Technology), a non profit driving adoption of patient safety solutions and in this capacity he teamed up with CareFusion and AORN (Association of periOperative Registered Nurses) to produce “Chasing Zero” for the Discovery Channel.

“Chasing Zero” first aired in April of 2010. It stars Dennis Quaid in his new real-life role as a patient’s rights advocate. It is a very strong documentary about patient safety, and it made quite a splash in the world healthcare and patient advocacy. I had seen parts of it before meeting Chuck. I knew about the reason why Dennis Quaid was acting as a spokesman for patient safety as well. I had seen a repeat of his March 2009 appearance on Oprah while Fred was sick in the hospital. I heard him speak about the fateful overdose of his young twins due to a case of look-a-like bottles of blood thinner. The twins were mistakenly given a dose from a 10,000-unit bottle instead of a ten-unit bottle… and it happened twice. The twins did live, but this acted as a wake up call for Dennis, and he decided to help so others would not have to suffer as his family did. Dennis Quaid’s inclusion helped a strong documentary become a must-watch call to action.

Chuck asked me how I had gotten invited to CMS. I couldn’t tell him at that moment as I had forgotten the complete course of events, but now I see clearly.

I spoke before CMS, because on Sunday, May 3, 2009 I worked at Barstons Child’s Play- the toy store. I only worked at the toy store for three days when Fred was sick, and one of those days was May 3. Fifteen minutes before the store closed, Christine Kraft, a long time customer, came in, and I told her about Fred and kidney cancer, and she told me about Twitter, blogging, Health 2.0,and ePatient Dave. After Fred entered hospice, Christine put together a small Health 2.0 get together on May 27, 2009. That day I met Ted Eytan, MD. I would later find out he worked at Clinovations in DC and he would introduce me to Greg Fuller who would pitch patient participation at CMS on November 8. Greg would give them my name.

So on December 2, I spoke before CMS about Fred, patients’ rights, Stephen King, social media, special education, and Cub Scouts. I would tell them that putting the “H” in HIT requires remembering… Holliday, Fred; not the patient in room 6218. After I finished, a slow standing ovation spread through the room. Then Chuck Denham can over to speak with me about how he would like to spread this message far and wide. We spoke briefly, and when he learned we would both be at IHI on December 5, he asked me to film a small piece we could send to clinicians about why it is so very important that patients and caregivers have access to the electronic medical record.

Then Chuck did something very few people have ever done. He asked me how I was feeling, and he really listened to my answer.

I told him that when I paint or speak I go into that gray, sad place, and I walk in darkness for a while, but I come back renewed and refreshed. Chuck told me he has worked with many advocates, and he is concerned. He is concerned about our continual revisiting our deepest sadness, just so we can tell our tale to others. He worries about us and wants help us. So when we were filming on December 5, he asked what is it that helps me and inspires me and what supports me in my sorrow? I looked him in the eye, and I said God does.

So Dr. Charles Denham did something that no other doctor has ever done with me. In all the hospitals we stayed in, no doctor ever reached out and prayed with me.

In the many hospitals Fred stayed in, we were asked during admitting if we would like “a spiritual consultation.” This was asked with all the presence and compassion as the familiar phrase, “Do you want fries with that?” Even at hospice, when the bereavement coordinator spoke to me, she focused on my emotional support system. I told her that God sustains me. She rephrased it to me, “You mean that your belief system helps uphold you.” “No,” I said. “My belief system does not hold uphold me. God enters my soul and gives me peace.”

So, I sat there with Chuck and we prayed, and once again, I felt that wonderful peace of God.

CMS Presentation putting the H in HIT

View more presentations from Regina Holliday

"Patient Centered Care" at IHI

“Patient Centered Care” as shown above is in progress on the 5^th of December, 2010 at IHI Conference in Orlando, Florida.

I paint about health data. I paint about patient stories and better healthcare practices. I paint about these concepts on public walls by city streets or on the backs of business jackets of healthcare advocates as they attend medical conferences. And sometimes I paint on canvases in the middle of a conference. When I paint onsite, I listen carefully to that which is said and incorporate the spoken meme as well as the twitter feed into the painting.

This painting is “Patient Centered Care” and I painted this at IHI (Institute for Healthcare Improvement) during the Patient Activist Summit and during two mini sessions on Health IT, Meaningful Use and Patient Data. If you look closely at this painting you see the background is the deep purple outline of the IHI logo. As the patient summit began the power point display was one slide. That slide was the IHI Logo. It loomed large above us as each activist introduced himself or herself. There were 50 or so activists and they were supposed to introduce themselves with a Twitter intro, keep it short only 140 characters. Not many were on Twitter so perhaps they misunderstood as they spoke too long during introductions. Perhaps they understood perfectly well, but after being in situations where no one listened while they or their loved ones where medically harmed, they were desperate for the chance to talk. So the “I” in the painting began to radiate circular waves of communication like a radio tower set to transmit. So we spoke, some tweeted and I painted.

I stepped back and listened to the patients and clinicians in the room who were willing to grasp hands and support the changing world of healthcare. So within the painting stand two beings. One is male and one is female and they are golden and seem almost holy and they clasp arms to support the world above them. On the right side of the golden female figure, a doctor stands. He is serene. His hand is placed under the golden women’s arm supporting her and joining in her effort. To the left, a young boy supports the arm of the golden male figure. In his other hand he holds an I-pad as this is the way the child communicates within his world. Both the boy and the doctor are people of color. Their inclusion is viewed as instrumental in creating balance within healthcare. Though they are on opposites sides of the canvas, they are the same person at different stages in one life.

To the far left, a suffering cancer patient leans on the shoulder of the golden male figure. Her gown back is gaping, but she is far beyond caring about this embarrassment, as she is deep within the final stages of her disease. She is leaning on the system for support and has no more energy to give. In front of her stands a child. This girl holds a children’s book about Phineas Gage. Do you know about Phineas Gage? He was a man who lived in the nineteenth century and had a metal rod driven through his brain. His story- the patient story- greatly affected the thinking of the times in regards to personality and the lobes of the brain. The child knows this story, she has read it in a children’s book. She knows about the power of stories.

The world in the center of the painting is the dot of the “I.” It is forms a yin and yang symbol within IHI where we are struggling to find balance. On the left side of the world North America is represented because that is where IHI began. An eye looks upon you from the continent. It is looking at you, demanding you use vision in creating better care. To the right side is a clock. The numerals are in Latin and the choice to depict time in ancient increments represents the current lack of clear communication and a reliance on old antiquated systems within many medical institutions. Both the hour hand and minute hand point to three ‘o’clock as we try to support the “triple-aim.” The clock itself represents an oft-heard clarion call of the activist: the time for change is now.

In the center of the world clock resides a call bell. Bart Windrum brought this bell so each activist could ring it after recounting his or her tale. It reminds us of to the old call bells patients used before modern technology introduced the silent, efficient and sometimes ignored call button. This bell is red and it represents warning. It is also a Liberty Bell and emblazoned upon it are the words “Information Liberty.” Above and connected to the bell are the scales of justice and they too point to the desperate need for balance between the provider and the patient.

Below the world is a table set to explain why clinicians need to consider EMR adoption. This element is based on the talk given by Ann Lefebvre, called “Integrating Health IT into a Statewide QI Program.” She mentioned that they invite their clinicians to discuss systems and EMR’s four times a year. So the table is set with plates saying things like EMR and HIT. The two candelabras at the table light the surroundings but they also contain the symbols of money and percentages. Often these kinds of talks can be more about incentives and dry data bytes and less about the actual patient outcomes.

Below the table is the Twitter feed for the conference and that pours into the patient centered medical home. The roof of this house is the IHI triple aim: population health, experience of care and per capita cost. The Cub Scout character connection of know, commit and practice surrounds it. I threw that in as I am a Den Leader and know that change only happens when you promise to do your best and you keep your promise. At the door of the home stands a very small patient. Patient centered care was discussed in an in depth fashion by Laura Adams, J. Robson and Jaquelyn S. Hunt during “Whose care is it anyway…and Can Health IT Help.” The patient is holding up a ruler and trying very hard to be centered, but if you look closely, you see the center of the painting and the home is slightly off kilter. This lack of center exists in the painting because that is the current experience in US health care. But there is hope. Due to the work of the folks from IHI and Patient Activists and Clinicians we have hope of attaining balance, and making this vision of the future a reality.

The finished piece can be viewed here. I hope you get a chance to look at it. This photo was taken right before I addressed the room about our family story and the meaning of the painting. I was not on the agenda that day, but the speakers were so gracious as to ask me to present. I told them about the very personal reason I advocate and I explained the painting.

The entire room of attendee's to the session "Who's Care is it any way...." gathered around the painting. You will see me in the middle, slightly left of center. I suppose that is a good place to be as we strive toward patient centered care.

Caregiving

I am very honored to post a guest post on this blog. This post was written by Alisa Gilbert.

What A Caregiver Taught Me About Human Connection

This past summer, my best friend lost her grandmother to old age. She died a few days before her ninety-third birthday. She had suffered a serious stroke the winter before, and had been shifted from her nursing home to hospice care later that spring.

A team of caregivers rotated through their shifts to care for her, to change her bedding and diapers, to feed her and make her as comfortable as possible, in what I used to think of as a simple, perhaps distant activity. Now I understand that much more can come of proper care-giving. Towards the end, after her grandmother had suffered a series of minor strokes, my friend described how they used a miniature vacuum to clear mucus from her mouth. I had never understood the emotional and physical toll that hospice care can have upon everyone involved—the staff, the patient, and the family members—until I had to comfort my friend through that tough half of the year.

Each day she returned from visiting her grandmother, I heard stories of one specific caregiver, Mary, who seemed to have taken her job and utterly transformed it into a lifelong calling. My friend's family had dealt with other caregivers that seemed less interested, a pair of which had quit in the final days because they decided they'd be better off looking for more work, so to hear the talk of Mary seemed encouraging despite the sadness of the situation.

One day that final month my friend asked me to visit her grandmother with her, so I steeled my nerves and went along. Besides I wanted to meet Mary. When we entered the room, we were greeted by a short, middle-aged woman with brown hair and tears in her eyes. She immediately hugged my friend, and then hugged me, after which I was introduced. Mary gave us an update on the day, all of its tiny particulars, and then my friend sat by her grandmother.

Mary gave us a moment alone, and when she returned, my friend left to use the restroom, so I was alone with Mary and my friend's sleeping grandmother. Mary made small talk with me for several minutes, and then I watched as she quietly reached over to my friend's grandmother and with a cloth gently wiped at the corner of her mouth.

I understand that this is not necessarily a unique gesture, but it still struck me for the power I felt in the room. I will never forget the way Mary sort of filled the room with her emotions that day. She struck me as the kind of person who had a deep, deep respect for both her patients and the family members of her patients. I'm not sure I have ever witnessed in someone a sympathy for others as strong as hers. In a way, her example, the way she acted in that little hospice room made me rethink how I consider those who are sick and those who take care of them, and the warm connections that can exist between them.

By-line:

This guest post is contributed by Alisa Gilbert, who writes on the topics of bachelors degree. She welcomes your comments at her email Id: alisagilbert599@gmail.com.

Thoughts Induced by Chewing Ice

In the summer of 1976, I was four years old. This was the summer Americans were told to go on the road and rediscover America. Our family followed the national advice and began a road trip that would take us from Oklahoma to Kansas, Missouri, Nebraska, Colorado and New Mexico. It was a magical time. We piled into our brand new ’76 Chevy Impala and tasted the freedom of the road. Even though I was only four at the time, two experiences were seared within my mind during those kodachrome brilliant hot summer days.

While in Colorado we visited an amazing amusement park called Santa’s Workshop. Ten miles west of Colorado Springs, they have North Pole experience complete with a Candy Cane slide and the tallest Ferris wheel in the world. I will never forget the moment I rode that wheel. My family peered up at the huge ferris wheel that was built upon a mountain at a 7,500-foot altitude. The wheel operator dared us to ride the enormous structure. My mother chuckled and said she would not, my father laughed as well. I stepped forward. I said I would like to ride. The carny asked if I was sure. Did I really want to ride all by myself? I nodded yes, and was lifted up into the seat. The carny man pulled down the restraining bar that floated eight inches above my legs. I looked around to see, and found I was one of very few people who had attempted the ride. As my seat rose ever higher, my knuckles whitened around the restraining bar. I realized how easily I could fall. I looked at the great space between my legs and the bar and stared at my little fingers pressed so tightly on the cool metal. I looked down at my scuffed canvas shoes as they dangled so many feet above the crowds. As I reached the pinnacle of the ascent, I looked down so far below at my small family. At that moment, I felt so proud, so strong; I alone had braved the ride. I was filled with fear but I would not let it panic or conquer me. I was so glad that I got to do this. I cherished the moment and the trust my parents had in me, that even though I was only four, I could be brave. I was joyous and I was on top of the world.

That was an empowering experience. I floated bravely above for a few moments, but most of life is lived upon the ground. It is just as important to find empowering events within one’s daily life. So my other amazing experience of the summer of 1976 would be considered a boring reality to many, but I still remember and cherish the opportunity to get ice from the motel ice machine. To this day I cannot pass a hotel ice machine without smiling. Have you ever noticed as an adult you must crouch down slightly to get ice from these machines? I have often thought they were designed with a child’s height in mind. When I was four, many privileges and responsiblties were literally out-of-reach. I could not reach the sink to wash dishes or get a drink. I could not reach the dishes in the cabinets to set the table. But as we stayed in hotels, I began to relish my new duty of getting ice. I would take the ice bucket and would run down the hall to the ice machine. I would listen to its calming motor hum, as I would place the bucket on the lever. The rattling clunks would echo inside the machine, as the motor would gear up. The hole above the lever would begin to spew the mounds of ice into the bucket. Hotel after hotel, I would do this ritual and I discovered there were many types of ice. In some motels it would come out as cubes, sometimes it would be frozen rounded discs and sometimes wedge shaped smiles. By far, my favorite ice was the donut type. This ice would cascade out in circles. My sister, my brother and I would eat this ice like it was popcorn. I loved the way it would roll within my mouth. I loved the delightful chill of slipping my tongue inside the hole within the ice. I would press my tongue until eventually the ice would turn thin and sharp, and then I would crunch my teeth upon the shards. I loved chewing ice, but even more I loved the ability to get that ice myself.

So the child I was became the wife that stood in front of other ice machines. Pastel pitchers had replaced the old plastic bucket. I had lived much in the 33 years between hotel ice machines and hospital ice machines. I had married, given birth, managed stores and was well acquainted with both responsibility and privilege. So as I begged for access to information and asked how I could help my husband, I was handed a plastic pitcher and given the one duty I could be trusted with. I could get him ice water. Each day, many times a day, I would get Fred ice. I would leave the room and carry that little pitcher down the hall and fill it up again and again. I grew concerned as time past that the facilities did not replace nor clean the pitcher.

In the first hospital we had the same pitcher for two weeks before it crashed upon the floor and shattered. It was then replaced. Fred went for another two weeks with his second pitcher. It was a mauve pink pitcher and I took it home upon discharge. (It became my water bucket while painting 73 Cents.) At the second facility, Fred again was given a plastic pitcher. After a week of using it, I came to the hospital one morning to find a black substance inside the bottom of the pitcher. I showed it to the nursing supervisor, she alerted other floors about the potential for patient harm. While Fred was hospitalized, we saw that facility take steps to discontinue use of the re-useable, yet never washed, plastic pitcher.

So as Fred grew more ill, I often thought of ice and ice machines. The first thing I would do each day was to get him ice. The last task before leaving his room was to check and see if his pitcher was still filled. It made me sad. Sometimes I too, would drink the water and chew the ice. I would think of the ice I sucked upon while I labored before the birth of our two sons. I would think of the happy anxious father who would eagerly go down the hall to get me ice chips. He was so nervous he practically bounded down the hall. I chucked through the pain of childbirth, upon seeing his behavior, but at least that duty made him feel useful.

Those are thoughts induced by chewing ice. Eventually thoughts like these grew into a blog. Eventually they were shared with anyone who would like to see them. On December 12^th I wrote of ice. I wrote about the ice that chewed the bowels of a very important ship. I wrote about what medicine can learn from events within our past and the importance of wireless technology on the Titanic. The blog was called: Social Media on the Titanic: RT @Titanic #ICE BURG ahead :(

Because of that post I met an amazing man known as the Ice Chewer on Blogger and Twitter. He posted this comment:

I feel grateful that you are writing this blog. Our inefficient health care system manages to stay this way because patients and families, at the moment when they are most vulnerable, have to spend their emotional resources dealing with unilateral and arbitrary decisions of hospital administrators, insurance companies, and doctors. And that is how we lose our energies to fight for change. But seeing that you and others who went through a terrible experience are not giving up, gives us all some hope and inspiration to fight. Thank you!

By the ice chewer on Social Media on the Titanic: RT @Titanic #ICE BURG... on 12/12/09

12/12/09 http://icechewer.blogspot.com/

That is how I met Yuval Sheer. He lives in New York and writes a wonderful blog that reflects upon life and art and, of course, chewing ice. In the classic sense of knowing someone by meeting him in person, I suppose we have yet to meet. I feel as though I know ice chewer through his quirky writing, interesting photos and the amazing artistic interpretations of created by his dear Mettookonet.

The ice chewer has posted comments on my blog 10 times and we also touch base on Twitter. In July, I was honored to receive a precious copy of his limited edition book: “Thoughts Induced by Chewing Ice.” It is filled with many posts of wisdom and makes me wish I could be far wittier than I am. The ice chewer writes with wit and humor as he chews on cold ice. I blog of pop culture, health and my family with deep emotion and often hot tears. We both use photos and art frequently to make points within our posts.

My favorite page within his book depicts an artist painting an I-phone at an easel. This page was based on a post from November 5^th, 2009. The text of the post was as follows; “I took a photo with my cell of a man hanging his photography work on a wall at the subway station. He got angry and told me: "good luck with your non-creative life”. So I got creative, and blogged about it.” -posthttp://icechewer.blogspot.com/2009/11/good-luck.html

I love this statement. It is not enough to only paint. There are many types of artists and art, just as there are many types of ice. It is the thoughts induced by chewing ice and art that lead to innovation. Those thoughts can lead to change, to action. They can create a new hospital policy. They can lead to a change in national laws and they come from a willingness to share and contribute to the whole. Thank you so much Yuval Sheer for sharing your thoughts with me. Thanks for placing a picture of an artist on the 73^rd page of your book.

The story matters, whether it written on 73 pages or paid for with 73 cents. I am glad I can share that story. I am glad I can bring it all to the table and present the patient voice. Little girls who ride Ferris Wheels can grow up to be brave women who climb high ladders and share sorrows for the entire world to see. Those women can meet brave men who share their vision and realize that every event and every person is important. These are the thoughts induced by chewing ice.

A poem to the Yuval Sheer:

I wrote about an ice burg and he found me.

In darkness, I swam upon the sea of data.

As the code and cold lapped upon me,

I wrote of the Titanic and of Twitter

on a cold December day.

And met he who chews the ice.