Gown of Tears

"A process cannot be understood by stopping it. Understanding must move with the flow of the process, must join it and flow with it."

Dune ~ The First Law of Mentat, quoted by Paul Atreides to Reverend Mother Gaius Helen Mohiam

The man spoke to me with a smile and a quizzical look, “Were you really crying up there on stage?”  I assured him I was crying during my speech.  He just laughed and I looked over at Amy Edgar.  A knowing look passed between us.  He doesn’t understand.  He doesn’t understand the pain; nor the tears of pain remembered.   But Amy does.

I met Amy Edgar in Vancouver at Collaborating Across Borders IV conference.  She lives in Pennsylvania and works at Cedar Crest College.  She is an assistant professor of nursing. I am sure there are many stories she could tell from the world of nursing, but this painting is about her daughter.

This is “Gown of Tears” the painted story of Sara.

I ask you to look in the face of this girl.  I ask you to see the hurt in her eyes, the deeply broken trust. 

On December 31, 2006 ten year old Sara fell.  It was a small thing, she was soaring over her sister as children are wont to do.  She hit the edge of a hardwood stair and screamed in shrill animal pain.  Amy rushed to her and checked for breaks.  It looked like it would be a very bad bone bruise.  Amy gave her ibuprofen and iced the injury as an ER trip on a holiday is to be avoided, but after a day in anguish they left to get an x-ray.  There wasn’t a fracture so they were sent home again with Sarah in excruciating pain.

Amy scheduled an ortho follow-up.  An MRI determined a hairline fracture. Percocet was ordered to combat Sarah’s pain.  When that did not work Vicodin was ordered.  Then Valium and Vicoprophin were added to treat the pain of this 68-pound girl.

Next the pain began in earnest.  It radiated down Sara’s leg, the slightest touch would cause scream of utter agony.  Amy began to look for anything that might help her daughter. 

For the first time in her life Amy would hear the term “Reflexive Sympathetic Dystrophy” or RSD (it is also called Complex Regional Pain Syndrome).  This disorder causes a central nervous system closed loop consisting of a pain pathway that never stops firing.  Amy found out that statistics give patients a 10% chance of healing without pain.  Amy read that up to 75% of children with RSD attempt suicide.

For weeks Sara lived in a litany of pain barely contained by strong narcotics.  Then the true hell of physical therapy began.

Here, I begin to cry with Amy for I know that hateful dance. In my mind’s eye I see my late husband Fred, suffering in pain as cancer ate him from inside, being told to work through the pain and just take a step. 

So Sara danced the dance, and Sara screamed.

She screamed so long and so loud that they were asked to leave by the therapist.  At the next session Amy was accused of babying her daughter.  Sara’s pain now radiated from her toes to the top of her thigh.  Her skin mottled she would scream herself hoarse during treatment.

The family was sent to another treatment facility.  They hoped for treatment and respite from the pain.  They were only to hear a careless doctor through the flimsy wall say, “ Oh Great RSD… what do they want ME to do? Fix it?” His recommendation was more physical therapy.

Amy began to despair. Now the accusations began.  The doctor accused Sara of making this up to get attention.  Amy had never felt so betrayed by her profession. 

The family went home in defeat.  Sara’s little sister began having nightmares.  Sara stopped eating.  Sara stopped smiling.   She had not used her leg in six months.

Amy began searching the internet for centers of excellence in treatment of RSD.  She found Cincinnati Children’s Hospital.   They family arrived numb and prepared for another failure, but the team atmosphere amazed them.   Sara was assured that therapy would only begin when the pain was under control.  Sara was given an in-dwelling epidural and three weeks of intense therapy.  The family was fracturing under the stress of missed work and school.

At the end of week four Sara left on her own two feet.   They were saved.

But Amy works in health care. Each week she sees people and their pain dismissed.  She sees wives and mothers pushed aside and labeled non-compliant or little Miss A-type personality. 

Well, Amy is doing something about it.  She has joined the Walking Gallery and she will wear “Gown of Tears” in the hallowed halls of medicine. 

Tiffany and Lupus

When I was 20 years old I spent the summer with my mother in the house I lived in as a child.  I had only been away for less than a year.  It had been a very hard year.  I felt very alone. I was not doing very well in college.  I was falling. I was failing.  I went home to my mother’s embrace.

But I am unable to sit still for long. 

Soon I was volunteering for the local community theatre.  I only had one year of college but that was deemed sufficient training to be in charge of costume design and stage construction for the production Oliver.  Every spare moment I was building costumes or building sets on the local high school stage.  I scheduled a work call to build the set and only person showed up to help.  Fortunately he was a contractor, so we got quite a bit done.  The next day I began hauling 50 lb drums of drywall mud to the set, when I felt my back go out.  Once I could breathe through the pain I went to the office and called my Mom.  She came in her car to get me. I could barely walk.  Going to the doctor was out of the question since we had no insurance, so she placed me on her bed to rest with an ice pack on my back.  She rolled me over as needed, because I could not do that myself.

I lay within the room upon the softest white sheets.  In the center of the sheet my mother had embroidered a peacock in a sacred tone of blue.  I would run my hands over the hundreds of French knots that marked the plumage. An occasional gentle breeze would blow in from the open window and the window sheers would billow like the wings of angel.  My mother cared for me.

Soon the show's director called wanting me to come in to work on the set.  Now, my Mother is the sweetest, kindest person you could ever meet.  I had never seen her raise her voice outside the family.  But that night she yelled on the phone at the director of the show, and I smiled.  I knew my mother had my back, even if I had broken it.

Perhaps this story is the reason I loved Tiffany Peterson since the moment I met her.  She is an amazing advocate in the Lupus community and she orchestrates great deeds from far away, often while laying in a bed in pain. 

Tiffany is an older child in a large family.  For many years her mother depended on her help with the younger children.   Then one day Tiffany was sick.  For quite a long time no one knew what was wrong with Tiffany.  She moved down from her upstairs room because climbing became too much for her.  She was placed near her mother who became her caregiver.

This is Tiffany’s jacket: Tiffany and Lupus. 

I painted this in New York at Social Media Week NYC in February 2012.  I painted this at the easel while Tiffany told me her tale and a crowd swirled around us.  The strangers laughed and spoke with a slightly maniacal tone that accompanies the second glass of wine.  Occasionally, someone would jostle my easel or make a witty remark about live painting at a cocktail party. 

But within the spiraling conversations, there was a pool of stillness where Tiffany and I stood.  For beautiful, quiet Tiffany was pouring out her heart and I was wetting my brush in her soul.

In this painting Tiffany lies within a darkened room.  In the far background her father is represented only as a silhouette.  He is leaving her.  He does not believe her pain, after all she doesn’t look sick.



In the foreground Tiffany rests on purple sheets, the color of Lupus.  Her mother holds her as she holds her mother.  The love between them is palpable.




In Tiffany’s hand she holds her laptop.  It is her window to the wider world.  It represents all of her online friends who support her in her disease and on her journey.

Tiffany is beautiful, brilliant and she has so much to look forward to.  She has such a powerful voice online and in person.  But she suffers still.  She gets tired.  She watches what she eats.  She wears a hat in the sun.  No matter what she does to stop it, the disease can still assail her.   Tiffany does all she does while in pain.  When all of the other advocates have gone to sleep; it is just Tiffany staring at the blinking cursor.  Just Tiffany and Lupus.

"Feelings" Isaac Holliday's Jacket

(This jacket was designed by six year old artist Isaac Holliday.  He worked mostly by drawing in paint markers and had a little help with the background painting from his mom Regina.)

(Content is completely his own.)

This jacket is named Feelings.

My jacket is about happiness, pain and death.

Somebody is painting an eye. Somebody is an eye-doctor. They are happy

Somebody gets stabbed with a sharp thing and he has surgery. He has blood coming off of his bed.

This is Isaac’s Jacket.