A Hundred Hands

The Flickering Hand

The Flickering Hand

In September 2011, I became a part of The Walking Gallery as Regina Holliday painted my patient story on the back of my suit jacket at the Partnership WITH Patients Summit. I told her my patient story and she was inspired to depict the images you see to the right.

She calls the painting “The Flickering Hand” and says it is a painting of utmost despair.  In the painting you see my sadness as my hands reach out in distraught.

Anyone who has received a jacket from Regina realizes that her paintings have multiple meanings – meanings that reveal themselves over time and that eerily connect to each individual’s story.  I was confused by the painting at first though I saw discreet aspects that made sense to me.  Still I need Regina to tell me how she sees her work as I gain clarity in its significance.

Helping others

I am a patient navigator and patient advocate.  I am forever dedicated to helping others logistically and emotionally through healthcare systems. I endeavor to use my experiences and expertise to bring peace, comfort and stability to others who are perhaps lost or in need.  The hands in my story are reaching out to help others.

But I am distressed because in our society exist so many obstacles.  How can we provide food for the hungry, homes for the homeless, care for the sick?  How can we help each individual realize their human rights?  I want to help them all – to offer each a hand to hold through.

Yet forces fight against providing help, easing the pain of their fellow men and women.  Some despise the efforts to create systems of relief and demean them calling them in the pejorative sense “socialism” – worried about a perceived unfairness of distributing our resources.  Many place blame on those suffering for their circumstances.  Laws are proposed, and sometimes enacted, to prevent or impede the means by which we can help. And thus basic kindness the acts of offering dignity and love are lost.

I am in utter despair as I try to find a way to help all those around me.

My journey

Regina says my jacket depicts my ongoing struggles as I face a journey fraught with great challenges.

As you know, I am an e-patient.  I have described my voyage through an impossible healthcare system.  I have written of my hospitalizations and my 4 autoimmune diseases and 12 chronic health conditions.  I have told of my role as a caregiver.  I have expressed my fears and realities of the cruelties that hinder realizing my right to health.  In my story as painted on my jacket I am frantically reaching for others to help me.

My story continues as I still seek the answers to questions that may not exist.  Twelve years ago, while in high school, I left home to escape an unsafe environment.  I left terrified of what might happen if I stayed.  This decision has weighed upon me every day since.  My hands are reaching out to understand my life.  They are reaching out to find support and comfort, yet in sadness in this painting there are no hands to hold, to pull me up and I face and have faced so much alone.

The Flickering Hand shows me frowning – not a pretty picture of a woman who once smiled to cover the underlying secrets.  The hopeless expression struck me immediately when I saw my jacket.  No longer need I hide behind a façade, a mask.  I could carry the truth with me – life has is filled with sorrow and impossible trials.

Regina told me she hopes one day she will paint a happier version for me.

Briareus and his hundred hands

One of my favourite books is Les Miserables.  In reading a beloved passage yet again, my eyes fell upon a reference to Briarius –

Let us not weary of repeating, and sympathetic souls must not forget that this is the first of fraternal obligations and selfish hearts must understand that the first of political necessities consists in thinking first of all of the disinherited and sorrowing throngs, in solacing, airing, enlightening, loving them, in enlarging their horizon to a magnificent extent…in having, like Briareus, a hundred hands to extend in all directions to the oppressed and the feeble

A hundred hands.  So many hands extended in all directions.  Are these not perhaps a hundred iterations my Flickering Hand?

Who is this Briareus now connected with my story?  He is according to Greek mythology, one of three one-hundred armed, fifty headed Hecatoncheirs.  He fought great forces – alongside Zeus defeating the Titans, storming Olympus. He was an arbitrator and adjucator.  Homer says he is “stronger even than his father.”  He was buried under a mountain.  But most importantly, he is thought to represent gigantic forces of nature responsible for earthquakes, volcanic eruptions, and the motion of the sea waves.

Braireus, my one hundred flickering hands, convey my greatest wish, my greatest challenge, my utmost despair – attempting to change the world.  I want to be a force of nature and disruption.  To upset society as do earthquakes, to brilliantly explode and find recognition not to go unnoticed as the world is recoloured with the falling of ashes like volcanic eruptions, to conjure the power and awesomeness of the human spirit emulated by the motion of the sea waves.

I carry with me hundred hands reaching out, flickering, shining unsteadily as a candle or distant star to help others, to appeal for solace, to change the world.

The Flickering Hand, part of the Walking Gallery in Kansas City

___________________________________________

The Walking Gallery Reception at the Partnership WITH Patients Summit

 

 

This post is dedicated to Regina Holliday for her incredible kindness and untiring advocacy for patients and her one hundred hands.

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4 Responses to A Hundred Hands

  1. Ron says:

    Amazing post. Someone has to be there to look out for those of us who don’t even know what to look out for.

  2. […] didn’t write about this on my last post about my Walking Gallery jacket but now wish to point out that Regina Holliday painted the scales of justice on my back. […]

  3. […] I want to repost this post from the new Nebular Health Tech group founded today in Austin, TX.  As you can tell from this blog, Health IT is incredibly important to me as a human rights advocate, an ePatient, a lawyer, and an activist. […]

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