I Grok In Fullness

On the night of September 17^th 2011, I pulled an all-nighter in New York while painting in a silent library. My friend Manny Hernandez had asked me to join with several other artists to paint about Non Communicable Diseases during the UN Summit.

I met Manny during a Health 2.0 event over a year ago and we recited poetry about sickness and death over cups of coffee and conference snacks.  He would tell me of his advocacy in the diabetes community, and months later I would ask him to join The Walking Gallery.

He would join us in spirit but could not leave the west coast to attend our event.  A friend of mine named Pete Wright wore the jacket as a proxy on June 7^th at the KP Center. 

The Jacket was called, “Acceptance.”

This jacket is a close up and personal view of a forest.  The trees camouflage an insulin shot.  And a litany is etched upon the bark of those trees: “Initial Diagnosis: Pain, Anger Denial.”  This is followed by “Healing, Learning, and Fighting.”  Then finally we reach “Acceptance, Acceptance, Acceptance….“

It is a simple jacket design that describes an amazingly painful journey. 

So, I would paint for this poetic soul.

I began at 11: 17 pm after a full day of work running a Street Fair in DC followed by a long train ride to New York.  A friend of mine named Mary Welch Higgins, who is an artist member of The Walking Gallery, was painting and so were a few other artists.  The night wore on.  Most of the artists abandoned their canvases and went to bed.  Manny’s wife Andreina and I stayed to paint.

This painting addressed two diseases that have deeply touched my life: Cancer and Diabetes.  I lost my husband to Cancer and my father died after going blind from poorly maintained diabetes.  I am acutely aware of the stages of grief that lead to acceptance in these diseases.

So I painted this: “I Grok in Fullness.”

In this painting the background is bright and fiery,  red swirls of color spool into kidney shapes.  An eight-foot tall goddess or angel is poised as if to leapt from the canvas.  Her head is thrust back and her countenance stern as her eyes pierce the heavens.

My husband Fred dangles from her right arm.  He is as loose and flexible as a small child.  We can see beyond his gown into a spine wrecked with bone metastasis.  He has kidney cancer, or RCC (renal cell carcinoma) as they like to say in the cancer communities. 

I don’t use the term very often, for what does RCC mean to the average patient?  Perhaps it is only some letters written on my painting ladder.  I am sure RCC means a very different thing to the custodian of this building.

So, my sweet Fred dangles with his bones laid bare and he looks at you. His upside down face is filled with the acceptance preceding death, whilst his hands are bound together in hospital bracelets.

He understands that it is time to fly.

On the woman’s left arm an older man flails like a toddler who is reaching for a lost toy just as a parent sweeps him up.  But these toys are his undoing.  For this is my Father and he did not have to die so soon.  But pills and beer and diabetes do not good company make.  So as the years went by, my Father would lose his health, his sight and his life to a poorly maintained medical condition.

When it became too late and his shunt would fail, he would die alone.  When the nurse called with the news that the shunt had failed, we would not know that meant drop everything and come.  We did not know.  He was our Father, good or bad, and he should not have died alone.

On this night like so many in the past, I pulled an all-nighter with Fred.  I looked into his eyes again and I groked in fullness.

If you have read Robert Heinlein’s “Stranger in a Strange Land” you know the meaning of the phrase.  I sometimes hear it tossed about in a cavalier fashion by my tech geek friends.  But it means something so very powerful.  To grok in fullness you must embrace that which you do not understand, absorb it fully, become one with it.  And only then can you hate or love a thing. Only when you know it better than you know yourself.

Yes, I grok acceptance.

Meeting e-Patient Dave

It was the day before The Walking Gallery and I still needed to paint 15 jackets. 

On evening of June sixth my apartment was in total disarray. I was painting in the kitchen.  My friend Courtney Mazza was painting in the living room and children were running back and forth occasionally screaming for toys.  In the midst of this chaos, I heard a knock.  I thought might be the take out we had ordered, but no it was Bob Filley, Anita Samarth’s husband.   He currently works in Commercial real estate, but he majored in fine art.  He had offered weeks before to paint, and here he was in the 11^th hour.  He stood before me in the hall wearing a nice suit and lovely cotton shirt.  Behind me the room erupted with the jealous squeals of small children.

“Is it a bad time?” He asked.  I practically grabbed him out of the hallway.  “NO, it is not a bad time we would LOVE it if you could paint a jacket or two, or three.”  Bob looked around the chaos of the room, and carefully removed his jacket and nice shirt.  He stood in his t-shirt at my dining room table and began to paint.  He painted e-Patient Dave. As he painted I explained the life of e-Patient Dave.  I told him of Dave's Advocacy

"Wonder Twin powers, Activate!"

 And I told him of Dave's history of fighting cancer:

The Man Who Lived

It was amazing.  Have you ever scene that scene in a war movie where the bullets seem to be flying by the hero in slow motion while he bravely soldiers on unfazed by his surroundings?   That was Bob.

And he painted such a joyous Dave.  This is Dave De Bronkart’s Jacket by Robert J. Filley.

I love this jacket.  Bob filled the back ground with a series of descending kidneys.  He then began using sunshine tones to build up the smiling visage of Dave.  Using a wet into wet technique often used by oil artists, Bob built layer upon layer of wet paint into the shinning countenance of e-Patient Dave. He then worked a deep blue capital “E” into the background of the piece. 

Upon my table lay a piece of impressionistic fine art.  Bob finished Dave’s painting looked up and said “Next.”  Bob would finish two more jackets, before succumbing to exhaustion later that evening.

Dave loved the jacket and l wore it throughout The Walking Gallery.  But Dave and I go way back, and often it seems our stories are twined one within the other.  So, I painted Dave an additional jacket.

This is “Meeting e-Patient Dave.”

I met e-Patient Dave on May 4^th 2009.  I went on Twitter for the first time on May 3^rd, and wrote my first tweet: “I am trying to talk with Christine Kraft and epatient Dave.”  By the morning of May 4^th Dave had found me.  He sent me emails throughout the day as we exchanged details of my husband’s cancer care.  Within each missive he seemed more and more concerned. By that evening, I was talking with Dave on the phone.  By that night I was speaking with Dave’s own oncologist.

It was such a sad night.  As I talked with Dave I was making macaroni and cheese for dinner.  My three year-old Isaac was constantly wrapping his arms around me as I cooked and tried to talk.  The poor little boy he was so starved for time with Mommy in this the eighth week of his father’s hospitalization.

And as I danced around the kitchen balancing both motherhood and patient advocacy, the phone cord spiraled around us both.  As I recounted horror after horror to Dave, I looked down at my phone cord bondage.  It seemed like I was being embraced by hundreds of little “e’s.”  

That was an important night.  That night I learned about the term e-patient.  I learned about ACOR (Association of Online Cancer Resources).  I had been doing research for eight weeks but had never found ACOR.  I would converse via email with the list founder Gilles Frydman and would see post after post from people across the world fighting kidney cancer.

And I learned from Dave’s Doctor that soon it would be the end, sometimes there is nothing that can be done. Sometimes it is too late. 

So much happened on May 4^th 2009.  I stood within a kitchen wrapped within a cord of old technology whilst embracing the new.  I became an e-patient.

And two days later I would create a blog called “Regina Holliday’s Medical Advocacy Blog.” 

The weeks would pass and Fred would die, but I have never stopped talking with e-Patient Dave.  We are twined together because of Kidney cancer.  His story is light and ours is dark.  But both stories are so very important. 

So Dave has two jackets: one light and one dark, because to create great change within the culture of medicine we have to accept them both.

Not long ago Dave gave an amazing TED speech and it caused a lot of ripples in patient advocacy circles.  A few of those who felt those ripples emailed me and told me, "You should really meet this guy called e-Patient Dave."

I chuckled and said, "I have met him.  We go way back."