Non-compliant: The story behind #Teds2ndJacket , told side by side by Regina Holliday and Ted Eytan

“Non-compliant,”by Regina

This is a jacket for my friend Ted Eytan. This is his second jacket and it depicts his story.

He has been a member of the Walking Gallery for the past year. He has walked all over the country wearing Surgeon General Regina Benjamin’s story. 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.

It is so Ted. He is one of those amazing people who questions everything, and through those questions purifies thought and distills a million pleas for help into a coherent strategy. This skill is not without price, and Ted has paid and paid again.You 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.

We are non-compliant. 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.

“Non-compliant,” by Ted

After I ask questions, I often wonder if I should have just kept quiet. But then I meet people like Regina.

My face in the jacket is taken from the photograph below. I think I’m getting ready for my podcast with Regina that will take place 40 years later.

I am a first generation American, raised in a home where English was a second (or third, or fourth) language, by immigrant parents, who were refugees from their homeland.

My mother tells me I was an excellent student. I could never sit still though. I remember her coming to pick me up from first grade one day, finding that my desk had been put outside. She says I was making the other kids laugh too much.

I trained in medicine when it was pronounced that my minority status was “the last accepted prejudice,” and the President of the American Medical Association, Nancy Dickey, MD, told the world that the AMA would not admit gay, lesbian, bisexual, or transgender physicians into membership. I and many other physicians are still not members. Love always wins.

In 1985, I didn’t wear the same shirt as all the other kids.

In 2005, I didn’t either. Total coincidence. My rationale was that I wanted the patients in my organization to see me wearing their shirt, not another organization’s.

The worst presentation I have ever given was one where I was told to not talk so fast. That was the last time I tried to talk differently than I normally do.

I appeared in this magazine talking about giving patients their own health data in 2002.

When I joined the CCHIT EHR Working Group and later co-chaired the PHR Workgroup, I was told:  “EHRs are for doctors, PHRs are for patients.” My opening statement was that customer of the EHR is the patient, not the doctor. This didn’t seem to go over well in 2006. In 2012, a patient is being recruited for the United States’ HIT Policy Committee.

Unlike Regina, I received a champagne education, paid for by society. I got into social media because I wanted to be honest about what health care isn’t good at so we could get better. I started the organizations’s first blog before it was allowed.

I asked Regina Holliday to be in my jacket because she’s part of my story now, which is fantastic. It’s an unlikely pairing on one level.

Ted and Regina

 

Every day, Regina and I are “asked” nicely, sometimes not so nicely, to be like everyone else. This is hard, sometimes lonely, sometimes painful.

I think we’re both pretty good at adapting ourselves to a situation (and my social styles profile confirms this). Our problem is that we don’t know how to live someone else’s life.

On the other hand, I am ecstatically happy to live in a diverse community, in a family and with friends where the duty to rescue is the norm, in a society that has become more tolerant, where love always wins, Prevention is the new HIT, and it’s possible for doctors to be comforted by patients. That a life like this exists is a cool discovery.

2012: Whatever privilege we have we’ll use to make sure it gets better

 

See you at The Walking Gallery and everywhere it’s possible to walk. I’ll be wearing my jacket with pride. I’m the one with the perennially untied shoes.