Non-compliant

The woman looked at me and partially asked in jest, “What exactly does Ted do?” 

I am familiar with this question as I am a friend of Ted Eytan and he is not easy to quantify.  Shall I answer in the traditional way?  He is a doctor.  He works as a Director of the Permanente Federation with a focus on emerging technologies, utilization of social media channels and health information technology that supports patients and their family members in achieving an active role in their health journey.  But grasping the true concept of Ted is sort of like holding liquid mercury between one’s fingertips; for like mercury, Ted is fast and reflective.

In May of 2009, I attended a small Health 2.0 meeting in Washington, DC.  My husband was in inpatient hospice and gave me leave to spend a few hours with some amazing people who were trying to change the world of healthcare.  That day I would meet with Christine Kraft, Susannah Fox, Cindy Throop, Claudio Luis Vera, Nancy Shute, Dave deBronkart (via speaker-phone) and I would meet Ted.  Ted seemed so serene within the group. This was my first health meeting and I brought my husband’s dell laptop computer so I would seem professional.  Then I listened to presentations on ehealth.  At 3:15 I spoke and the room went silent as I recounted the horror my husband and I had faced these many weeks. Ted did what Ted does best, he listened to all I had to say then he asked a question: “What was the worst thing that happened?”

I answered, “Lack of access to my husband’s data was the worst thing.” The group then told me to focus on that.  For the past three years I have and I often have fought for patient data access with Ted at my side.  Recently I had the honor of painting Ted’s second jacket in The Walking Gallery.  This jacket would tell his story and it is entitled “Non-Compliant.”

Ted has been a member of The Walking Gallery for the past year. He has walked all over the US wearing Surgeon General Regina Benjamin’s story on his first jacket. He did an amazing job. So many people know more about our Surgeon General because this man was willing to wear the trials of another on his back.

But this jacket is Ted’s story.  Ted is one of those amazing people who question everything: the status quo, the old model and new trends. Through these questions he purifies thought and distills a million pleas for help into a coherent strategy.

Ted looks to the left when others look to the right. This skill is not without price, and Ted has paid again and again. You want know how you learn to see a problem from the outside?  You learn by being the outsider. You learn by years of darkness. You learn bravery while hiding in closets avoiding fists or taunts. You spend years standing out within a crowd, not fitting in. You learn in the lonely time of introspection that these other children see a different world.

Their faces are not finished yet.

When I was young, I loved to paint and draw old men. My friends wondered at my fascination. I said “I love to draw their beautiful pain.”  Ted has one of the most beautiful faces I have ever seen, and he had it as a child. In this painting, I stand behind Ted. My hand rests upon his shoulder. I too look to the side with a worried glance and question what is coming.  I know how it feels to see a problem from the outside.  I know the darkness that Ted has seen.  Yet we smile. Ted firmly replies to any set back, “Love always wins.”  The child in me holds the child in him. Together we are more powerful than we were alone.

We are the non-compliant ones. Do you know what compliant means? It means docile, willing, obedient, manageable and submissive to an excessive degree. Ted may be a doctor. I may be a patient. In this we are one, out and proud.  We are non-compliant. We question authority.  We question folks who say “That is just the way it is.”  We will not stop asking questions.

In April of 2011, I told Ted we should have a gallery show in the Kaiser Permanente Center for Total Health.  He responded with a twinkle in his eye that they would never let us pound a nail in these new walls.  I responded with a glimmer in my eye, “We won’t need nails we will wear the art upon our backs.”

Now 164 jackets later, I can firmly say a patient art advocacy movement was born out of a moment of shared non-compliance.

Love always wins.