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Tuesday, November 15, 2011

Kait B. Roe: A Life Unfolding on Three Jackets

I have spent the last six months explaining a concept called The Walking Gallery.  I have asked many people working in health to join this advocacy movement.

And they have.

They have walked in Greece, Australia, Canada, England, Belgium and The United States.  Everywhere they walk they are asked about their jackets.  Many people wonder how they can become part of the Gallery.  A few have asked me how they can “buy” a jacket. 

Well, I respond they cannot be purchased with money.  Each Jacket represents stories of personal pain and triumph.  They depict a soul laid bare upon one’s back.  Members of the Gallery wear their tale with such bravery from conference to conference. 

No, you cannot buy a jacket painting, but you most definitely pay for it.

This is the tale of Kait B. Roe and her three Jackets.  

The first jacket I painted for Kait is entitled Ephphatha

Kait in her Jacket


I was introduced to Kait through our mutual friend Ted Eytan.  She has worked for a number of years in patients’ rights in Maine.  We met for coffee at Politics and Prose this summer.  It was an amazing conversation because Kait focuses on medical records access just as I do, but her emphasis is on Mental Health records.

So in this painting, a circus tent rises.  The red striped tent walls seem more like prison bars than pretty muslin.  The acrobats on the flying trapeze wear straight jackets. 

Strait =Jackets


And I fear for these performers, because without their counter-balancing arms they shall surely fall.  One performer has fallen and lies upon the floor trying desperately trying to read the medical record.  As her eyes begin trace the words of her record, her straightjacket becomes butterfly wings.

Ephphatha


This is what I saw when I spoke with Kait.  I named it Ephphatha, for that is what Jesus said to the deaf and dumb: “Be opened.”  And as Kait speaks she is opening minds whilst opening records.  She is shifting the paradigm of expectations in relation to mental health.  She is eloquently speaking out with her words and with her jacket: “We need data access, too.”

The next time I saw Kait, I painted her another jacket.  

"Good Dog"  Kait B.  Roe's Jacket


This painting is called “Good Dog.”  It addresses the fact that veterinary care in this nation often is a more patient centered model with better data access.  In this painting, a younger Kait holds her beloved pet dog as the text streams by explaining the treatment the pet receives. 

My tummy hurts, I get to go to the vet the same day I call. 

Does your Patient Centered Care measure up to MY care in my vet’s office?

My best friend went with me cause I was scared.   So glad my pal went along with me, they heard things I missed.  I was so worried about the blood tests… But once I got the call… I was a happy dog.  Mom is on the phone with the vet… I am okay!

All of us have Patient Centered Care… Do you?” 

Kait will be moving to DC soon to dive deeper into patient advocacy.  She will have to leave her current pet dog with his other mother.  That dog loves the woods of Maine and would not be happy in our concrete jungle.  But Kait will miss him so, I am happy she can carry this dog on her back.

patient centered care the dog view


Kait is giving up a lot to be a patient advocate.  She will give up her dog, her home and her privacy.  She will do all of this for others so they will not suffer so.  But Kait‘s path toward advocacy began long ago, when Kait lost her mother.

This is Kait’s final jacket: “The Tipping Point.”

"The Tipping Point"  Kait B. Roe's Jacket

In patient advocacy, we all have a tipping point.  That point when we can no longer take the outrage and sorrow and we must do something about it.  My tipping point was being told access to a medical record would cost 73 cents per page, while my beloved Fred lay dying.  But Kait’s tipping point is a laundry basket in a hospital.

Kait was only five years old when her mother died.  She died as a result of a heparin overdose.  Kait’s mother went into the hospital to deliver her little sister.  She only lived for 7 weeks after labor she underwent 8 blood transfusions and spent most of that time in an ICU with no visiting hours for children.

Missing you

Toward the end an ICU Nurse hid Kait and her older sister in a laundry basket in the hope that seeing the girls would rekindle her will to live.

She died soon thereafter.

All I can see in my mind is a little Kait, as sweet and wonderful as my little son Isaac, a little Kait in a laundry basket with all the weight of her mother’s life in her hands. 

And her mother dies, and Kait loses everything.

Family Tragedy

Kait is a rare member of The Walking Gallery.

She has three jackets, and their price was very dear.

2 comments:

  1. I know Kait's passion for helping improve the lives and health care of others will have a positive impact on her work in DC, best of luck, Maine will miss her, as will her wonderful happy dog.

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  2. Regina, thank you for your kind introductions to DC, the #walkinggallery and for all you have shared with me. I will do my very best to live up to the challenges in front of me. But just like the many years in Maine, I will have help from those in DC like Ted Eytan, Christine Craft, Susannah Fox, Cindy Throop, and you, Reggie... I will not let you down.
    k

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