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Wednesday, July 18, 2012


What if you were alone and suffering? What if it felt like no one understood your pain and the people had turned their backs to you? Then suddenly a window opened and a blue bird tweeted about a new tomorrow.  You found there were others like you all over the world. Others like you trying desperately to reach out and become friends.

What would you do to make that vision a reality?  I know what Afternoon Napper did.  She tweeted, she blogged and most recently she began asking for our help on Medstartr.  She needs to raise $5,000 dollars by September 7, 2012 to help achieve non-profit status and host a retreat to help individuals who share her rare disease: FMD.  “Fibromuscular dysplasia is a rare, noninflammatory, nonatherosclerotic arterial disease that occurs most commonly in women and presents most frequently in the renal artery. FMD may cause arterial stenosis, occlusion, aneurysm, and/or dissection; however, many patients are asymptomatic and may remain undiagnosed or receive diagnosis as an incidental finding, “ explains Afternoon Napper.
But who is Afternoon Napper and what is in a name? Some patient advocates have embraced their name as banner representing patient rights.  Google Trisha Torrey or my name and post after post will appear focusing on advocacy.  You can find us simply on Twitter just using our names.  Whereas, some advocates are known by a handle that defines their name. @ePatientDave is the more often used to address Dave deBronkart than his given name and many times I have seen Sherry Reynolds greeted as @cascadia in person.  These names may seem whimsical, but within my mind I know Sherry is cascadia and Dave is ePatient Dave.  When I painted their stories I knew them as one person with many names.

Not so for @afternoonnapper.

I met Afternoon Napper on twitter.  She has a brilliant voice that slices through the often-mundane platitudes that flow through the twitter stream.  I offered to paint her jacket for the Walking Gallery based her concise and powerful 140 character tweets.

I did not know her name.

I knew she supported the rather controversial idea that it was okay to sleep when you are tired.  Quite a few advocates have spoken out online that a lack of sleep is the only vice still acceptable in health circles.  It is not okay to drink to access, eat to access or smoke, but no one bats an eye when one of us admits that we are functioning on less than four hours of sleep.   As matter of fact, we are rather proud of the accomplishment.  Our society supports such behavior as evidence of a strong work ethic.  Anyone who naps must be very sick or is a very small child.  God forbid you admit you admit to taking a nap in the middle of the day.  I have an adult friend who has commented on her Facebook feed that she planned to take a nap, only to be attacked in her comments field by her friend.

So let me introduce you to Sarah E. Kucharski aka Afternoon Napper and her Walking Gallery jacket: "méridienne."

"méridienne" a Jacket for Sarah E. Kucharski

The floor of this painting is a sky’s reminiscent of Van Gogh.  In January, Sarah recommended I read: “Lust for Life” a biography of Van Gogh that depicted the extremes of elation and despair that this artist experienced.  Sensing that Sarah understood a great deal of the anguish of Van Gogh, his artistic style is foundation upon which the Sarah’s stand. She even wrote to me about the book saying, ”In Irving Stone's biography of Vincent Van Gogh there is a line that reads, "Many times in your life you may think you are failing, but ultimately you will express yourself and that expression will justify your life." It was years ago that I first came across this maxim, and it immediately halted my reading and jolted my heart. There is no other quote that has resonated so deeply within me and continued to do so."

The composition of this image is defined by its Dichotomy.

To the right of the painting is Sarah the patient.  Her back is turned to the viewer.  She is an unknown quantity suffering from a rare disease.   Sarah has FMD.  Sarah has endured surgery after surgery in her short life.  She has lost some sensation on her right side, her vision is affected and her body is laced with surgery scars from bypass surgery, kidney removal and a stomach rupture.  This patient Sarah leans upon a wall.

The patient self

The Sarah to the left wears a wedding gown.  She is married to her disease.  She has embraced her life defined by pain and has taken a new name: Afternoon Napper.  She is beautiful in this role.  Her hair is upswept like many a bride.  She is empowered and taking charge of her life and making friends.

The sleeping Bride

In the center of this piece is a chaise longue.  This couch is the méridienne: the word referrers to the midday nap, the midpoint or midday.   Upon this sleeping couch a woman lounges.  She is the FMD girl: the avatar image of Afternoon Napper and she holds the heart from FMD Chat in her small hand.

FDM Chat and afternoonnapper

Behind her a window is open and a twitter bird twills a greeting.  “Join us,” he says.

We have often joked with @afternoonnapper on Twitter.  What is her real name?  What does she look like?  I threatened to out her in March for the Sarah that she is.  This morning I awoke to a wonderful post from Afternoon Napper on Facebook and it was saying “This is me.”  The article was entitled “NC Woman’sRare Disease Prompts an Uncommon Response.” The article focused on Sarah and her new project on Medstartr.

I am happy to see Afternoon Napper/Sarah become one amazing person.  Today I proudly logged onto Medstartr and supported her cause.  I would ask all of you to consider doing the same. If everyone who followed Sarah were to give $5 dollars each, Sarah would reach her goal.  That is such as small price to pay for all she has given us.


  1. In all cultures giving someone a name is a powerful rite of passage be it at birth or marriage or in some cultures when they reach adulthood..

    In some 1st Nation Traditions you get different names for times in your life but the community is the one to give them to you vs picking your own.

    Thank you for not only letting us know who Sara is (who I first met online and in person at the Stanford 2.0 event)but for reminding me that none of us are simply one thing and are never solely defined by our illness.

    Sherry aka @cascadia (which is the name of a region in Washington and Oregon defined by the Cascade mountains to the Ocean)

  2. It is so wonderfully weird to be written about rather than to be the one doing the writing!

    So many of us are dueling our dichotomy. Our halves are split and split and split again. I am a patient. I am a leader. I am a writer. I am a reader. I am a wife. I am a persona. Regardless, I am continually happy to be able to say — I am — and these two words increasingly become a so much more powerful battle cry compared to the projections of I will or the impermanence of I was.

    1. It was wonderfully great to write about you. I think you will make your goal my friend!