Last night I was reading the book “Feelings
” by Aliki to my almost 7-year-old Isaac. It is great book that discusses emotions; sadly we do not do this often talk about our feelings in regular life. The book discusses anger, happiness, sorrow and fright. On page 30 a small girl stands slightly offstage as she fearfully looks at boy onstage performing before a crowd of thousands. The text that encapsulates this moment is “You’re next Joanna. Don’t be nervous.” Isaac responded to the image by saying, “I would be nervous performing in front of so many people. Would you?”
“Well, Isaac,” I said. “I have spoken in front 5000 people and in rooms of only 20. I find the smaller groups often more challenging. But the most important thing in a speech is that you connect with someone. Even if I only touch the lives of two or three people out of the 20 or 1,000 in a room it is worth it. You never know what friends you will make if you are brave enough to stand up and share.”
This made me think of Gail Zahtz and the day I met her. You might have seen Gail’s writing recently she putting out some great blog posts
and is launching a new tweetchat at 1pm eastern on Tuesday called #cphc or carpool health chat
. I have been having trouble keeping up with her in creative mode. I think I am even somewhat jealous.
See this month is January and I know something about myself in January. I am sad. I will be sad probably for another month. I am always sad this time of year. My spirit ebbs and I desperately want the energy that comes with spring and renewal. I will plow through this time painting and doing my best to comment and to write, but life is lived as a walk through molasses.
So let us go back to May 2012, to light and life and fresh flowers. On May 7-9th
I had the honor of attending the ICSI Institute of Clinical Systems ImprovementColloquium in Minneapolis, Minnesota
. Gary Oftedahl
, chief knowledge officer of ICSI, invited me. He joined the gallery prior to the event and I brought his jacket with me. His jacket is entitled “The Two Paths.” I made the two paths function both as roads and as hands in supplication. On the left hand side, patients and doctors are working as a team. On the right doctors are at a distance and often on a pedestal. But there is hope. Some doctors from both sides are reaching out to each other in open communication. Gary liked it and told me I was free to paint in any session I wished.
As walked down the hall with my supplies I ran into Professor Brian Isetts
. I had met Brian at the Partnership for Patients kick-off in the summer of 2011, as he was a CMS Health Policy Fellow. He was so pleased to see me and asked if I would paint the session he was moderating. It was a wonderful presentation on medical reconciliation and patient communication. I painted the painting “Reconciliationship.”
This painting tells the story of when Brian met Edward and Sharon Jungbauer. Edward was a two-time kidney transplant recipient, has had two hip replacements, diabetes, hypertension and several other conditions. When Brian and his students met Edward he was on so many types of medication it was hard to understand what Edward was taking. Brian and his student team helped consolidate the list and make it much more manageable. So in the painting Edward stands on the brink of a cliff. His pills are dropping into the hands of the students as Brian the scholar orchestrates their distribution.
Whilst this is going on, Sharon is trying to help her sister. Her sister has been sent home with poor instructions for care and is in the process of overmedication. Fortunately Sharon realizes something is wrong and gets help. Brian loved the painting and it currently hangs in his office in Minnesota.
On May 8th
I began the second painting, “ The Lone Nut.” I began this painting in the main assembly hall as we tried vainly to follow Chief Technology Officer of the United States Todd Park
present a keynote speech using Skype. (He was supposed to be there in person but the Office of Business and Management had recently directed a 30% reduction in the federal travel budget.) It was painful and somewhat ironic to watch. The audio did not sync and it was very hard to understand his presentation. The audience made up of mostly of residents of the great state of Minnesota sat stoically through it all with only a few murmurs of complaint. During this I began painting the stylized pencil logo of the conference.
Soon we went into sessions and I split my time between tracks 3) Patient Engagement/Consumer Experience and 4) Integrating Behavioral Health and Primary Care. I was the only patient in the room in quite a few sessions and even though I was painting frantically, I asked a question in virtually every Q&A. I was getting rather angry as the day wore on.
I messaged Gail Zahtz
who lived in the area and asked her to drop everything and please come to the event as I could not paint, tweet and ask questions all at the same time.
Within an hour, she came to the conference.
I painted her Walking Gallery jacket and was going to give it to her as soon as she arrived. Her jacket is entitled, “The Big Girl.” Within the painting I reference the nursery rhyme, ”There was a little girl, who had a little curl, right in the middle of her forehead. When she was good, she was very good indeed, but when she was bad she was horrid.” The painting describes a scene where her teen “bi-polar” daughter hit Gail causing an injury to her face. Gail is one of the few members of the gallery to join with a behavioral health story. When Gail saw her jacket she cried and we hugged for the first time.
Then we got to work. Gail and I tagged-teamed the Q&A sessions as I continued to paint “The Lone Nut.”
The lone nut in my painting became a native Oklahoma pecan with its shell cracked. The face of a woman of color peers out of the shell casing. Her dreadlocks are roots and her eyes seem half open. She is the diverse and disadvantaged population I would hear so much about in the sessions that followed. She was the color in that sea of white faces.
Without her inclusion there is no growth or change. She is the seed for the care of tomorrow.
Above her and beneath the ICSI tree a few patients stand. To the right a mother holds her child up to the tree. He reaches out to grab a hash tag apple. How can he learn the message of better health if it is not shared through open media?
To her left two men stand arm in arm. One of the presentations focused on the use of the PAM– Patient Activation Measure. As I recently studied the ACES- Adverse Childhood Experience Study, I enquired as to whether they were using both measures to help patients. They said they were not. I hope they reconsider, as I do not think we truly appreciate the patient’s now without understanding their past.
To the far left of the painting a child and a patient who is suffering from cancer stand beside a tombstone. The stone is etched with the phrase Honoring Choices. This is an amazing campaign in Minnesota. Honoring Choices is a documentary series. PBS teamed with the local hospitals to create it and due in part to that work, Gunderson Lutheran Hospital has one of highest rates of completed advance directives in the nation.
I presented a speech as well. This presentation was called “Long Stories” and was based heavily on my comments on Meaningful Use Stage 2. May was a hard month in patient advocacy. We were getting a lot of push back from entrenched interests that patient data access must be delayed. My speech was rather fiery and passionate. Which might have been a mistake for a conservative crowd in Minnesota. As they stoically listened to my passionate pleas, my tempo and pace increased in an attempt to engage. Having seen the after presentation comments, I know I did connect with a few people but for the most part was considered “over-emotional.”
On May 9th I painted the final painting while Gail helped by tweeting. Tom Bodenheimer, MD
, MPH, FACP, from the University of California San Francisco (UCSF) did a presentation on the building blocks of care. I based the next painting on a slide from his deck.
I looked at the building blocks and noticed the patient was left out. He even remarked upon it in his speech and mentioned a future deck would need to include it. I painted “The Care Team.”
Here the patient holds his block within his hands. Around him are providers. To his right a nurse embraces him. She is a patient too. For if you look closely at her blouse you will see all the happy faces turn to sadness, though the overall color of yellow masks it well.
Soon I thanked Gary for the honor of presenting. Then I hugged Gail goodbye. I left her embrace a little braver, a little more willing to speak of the sadness that assails us all.