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Friday, September 25, 2009

Dark Willow and "73 Cents"


If you knew my husband, you are well aware of his interest in Buffy the Vampire Slayer. He was steeped in the knowledge of the Buffy-verse and wrote his dissertation on the subject. He often said that show dealt better with death than any other program on air. Oh, other programs had their moments. There was that Family Ties special years ago, M.A.S.H, and The West Wing. But Buffy was steeped in death, and for a show that at first glance seemed bubbly and filled with pop culture, it gave us the truest picture of the condition. On pretty much every episode someone died, but they were the unknowns, the extras, the ones there just to die. Buffy took it farther than that. This show would kill your mother, your sister, and your lover. Just as in life, no main character was safe. Although sometimes they came back. And they came back not quite right, as Stephen King could have told them. But when they died, and died without returning, it was as sad and final as it is in life. Fred often said there is no better media dealing with death then episode 5.16 of Buffy called "The Body". Buffy discovers her dead mother Joyce. Joyce's eyes are open and she lays awkwardly in death's embrace. This episode is all too real from its title to the massive sorrow of the grieving cast. Buffy did not stop there. Dark Willow was still to come.

In the sixth season of Buffy, Willow's lover Tara dies due to a bullet meant for Buffy . Willow loses her Tara--her world. She is consumed by grief. In her great despair, she floats several feet above the ground. She has literally lost contact with the earth. Her clothing has become the black of the witch or the widow. Great and terrible she's become. Her vengeance knows no bounds, and it consumes her. Only through the love of her friends is she able to re-connect with the living.

Some of you might wonder what this has to do with health care. It really has quite a lot to do with health. Buffy was not afraid to talk about dying. Dying was part of life. What really matters is how we live while we are here, how we treat others, and how important it is to stand up for what is right, even if it is hard. Someone asked at Fred's memorial service, "Will you go Dark Willow?" I said I would on a Twitter post soon after. I suppose in a way I did. I float above you on my ladder with my red hair wind-whipped, painting a world of darkness. I have lost my Tara.

73 Cents, my tribute painting to Fred, my treatise on the current medical system, is almost finished. In the words of Martin Luther, "What does this mean?"


The center of the picture is our family. My husband is positioned like Marat in David's Death of Marat. His eyes are closed and he is peaceful. Not quite dying yet, merely sleeping.


He holds in his hand a paper that says "Go after them, Regina." For that is what he told me to do. He said later that I was "pulling a Regina", which means to go all out, never stop, and never give up.


I am the woman with three faces. A plastic beautiful mask faces my husband. This is one of those plastic Halloween masks we used to wear as children. You know the type, with holes for eyes and nose. Your face became so moist underneath as you tried to breathe and yell trick or treat. These masks were cheap and well within the means of a poor girl. They did their job well-- no one knew what you really looked like. Beneath, unseen by all, is my true face. There is only one photo taken of me during the first weeks of Fred's illness. I stand at Easter between my boys. I am terrifying. My face is white and monstrous. Fred saw the photo. Over all the many years we were together Fred saw me at my worst. I remember this one photo he took in 1996 while I painted all night on a dress-up truck. I looked horrible--tired with no make-up and glasses. I wanted to tear it up. Fred said smiling "Don't, I think you look beautiful." Fred saw the Easter photo. He told me to destroy it. "That is not you; it is scary." Looking behind me another face beseeches the nurse for information. This is the care giver's face, sad and distraught, trying to provide help. My pose is the same as one of the figures from Picasso's Guernica. Note my body appears to be restrained from my husband. It is as if invisible hands are pulling me away.


To the left of the family triangle, my three-year-old Isaac is playing with blocks. Those blocks spell out terms familiar in health care EMR, HITec and ARRA. He holds an 'I' block. This stands for where do I fit in the system? Isaac's eyes stare out at you like an innocent in an icon painting questioning your soul, his half smile seeming to judge your true intent.


Above my husband, looking through the door crack is my elder son Freddie. His eye is scared and striking. He is distant and removed from the scene. Oh, poor Freddie, he suffered so. An autism-spectrum child in a hospital setting suffers. All of the sounds and the smells assault his senses while the sorrow and fear assault his mind. I remember the day we told him Daddy had cancer. He sat in his visitor's chair 9 feet from his father an began to cry. "No, not cancer, because I have seen those commercials on the TV. 'The race for the cure.' There is no cure for cancer, Daddy. You can't have cancer!" I remember the day Fred entered hospice and I had to explain to Freddie what that meant. He cried for hours and told me he was losing his "best friend."


To Freddie's left a nurse is reclining in a chair drinking a soda and using Facebook. She is not engaged in the tragedy surrounding her.


Above, within the room, is a clock with no hands...for time has stopped for us even as the rest of the world keeps going.


Beside the clock is the light from Guernica, now halogen instead of incandescent as we are entering a new age. The fixture barely lights the few feet around it. Darkness surrounds the space.


To my wife figure's right stands a nurse typing on a computer that is turned off.


She appears to not be engaged, yet she is handing me an important paper behind the doctor's back. She is handing me the MAR or Medicine Administration Report. I need this document to make sure correct care will provided for my husband in the next hospital. Beside the nurse, the oncologist seems angry and not interested. As a local child asked his mom at the mural, "Mommy, who is that evil man in the picture?"


He is talking on a cell phone. He is engaged with technology, but not for providing care to this patient. At his feet stands a ram symbolizing sacrifice. The ram also looks upon the viewer but seems to channel the thoughts of the doctor, and his countenance is malevolent. The computer stand appears to have branches that end in hands. The tree symbolizes the Tree of Knowledge. It is lifeless and is in part a turned off computer. This symbolizes a circuit of knowledge that is going nowhere.


Beside them to the right is an EMT tech pushing an empty gurney. He is crying. His back is slumped in grief as well as in the physical task of pushing the gurney. He represents the 46 separate times we were loaded up and sent for radiation or facility transfer. Even though Fred's hip was broken in one gurney transport and he was dropped during another, Fred came to look forward to the transports. For three to four minutes a day Fred could be outside, he could smell the grass, see the sun, feel the wind upon his face. Between March 25, 2009 and June 17,2009 Fred enjoyed about three hours of fresh air due to EMT transport, at all other times this bed-ridden patient was imprisoned within a hospital or living room. The gurney points to a window in the mural. The window represents that freedom to enjoy life and to hope for a future.


The little girl America stands to his right. This image came into the mural as the health care debates began and I saw kind, well-meaning people oppose health reform. I wondered "How can you be against this?" Then I realized they were acting like people who have been abused. She is a pretty little girl with welts on her legs, and she is standing next to a switch. She clutches the caduceus. Most Americans equate this symbol with medicine, but it the staff of the god of profit, thievery, and death. In using this symbol I am pointing out that little girl America is clutching that which is abusing her. She stares out at you with a sad countenance. It seems as if her eyes are asking "Do you see what is happening to me? Can you make this right?"


To her side we have a medical person tied up and standing in medical waste and red tape.


This is to symbolize how the waste in the system is tying the doctors' hands behind their backs. I used actual pieces of medical waste from Fred' s room as models for this part of the painting. The woman looks out at us her gaze impassive; she is staring. She is neither despairing or joyful. She is bureaucratic.


To her left sits our waiting visitor/guest. This represents a real friend who kept coming week after week. Very few people did this. He watched his friend from day one gradually fall deeper and deeper into sickness. He kept coming back. He went to five facilities and home hospice and he was there the day before Fred died. Note how far away he is from the patient. The medical process is distancing him just as much as the creeping shadow of death. Together, the visitor and medical person are placed in front of an open window. It is light outside. There is hope out that window. Outside in a stylized tree sits the blue bird of happiness. This is symbolic of the hope for the future, the love of the journey we had together, and the acknowledgment that happiness exists in the moment. The tree and bird combined remind the technology-versed of Twitter, and point out that hope for a better journeys exists when technology and patient care is combined.


To the left of my son Isaac is the housekeeper. I based her on my mom who was a hospital housekeeper at Bartlet Hospital in Sapulpa, Oklahoma for many years. She holds the tools for her profession. The soiled linen bag beside her is overflowing. The lack of staff in a lot of facilities has lead to trash and linens getting to this overflowing state. The sign at her feet refers to the slippery slope of the current health care debate.


To her left is a physician holding a sign for reform. He wears a turban. He looks out at us with kind eyes. He is the other, the foreigner who embraces reform as a right.


To his left are three figures at a desk. First we have see no evil (insurance). She is an angel/Roman god wearing a blindfold and carrying a blue cross and blue shield. Money pools at her feet. Next is hear no evil, a man representing small business with his hands over his ears and his posture in defeat. His desk is strewn with papers while time is running out. Finally we have speak no evil, a pharmacist figure who talks into a phone with a mask over her mouth. Pills pool at her feet.


To the far left a movie reel is un-spooling the last frames of my husband's life. The film reel represents the media as well as my husband. It is in darkness. But if light is projected through it, it will change everything. It will tell our story.


Front and center on the mural is its name, 73 cents. Coins are painted in this amount. This is how much you pay per page for your medical record in the state of Maryland. In Texas it is a dollar. In Germany it is 88 cents. In the US, you also can wait up to 21 days to get the entire record. Step back and look at this painting. It is large and painful and disturbing. No one is touching each other and they all are placed in darkness. No one is making eye contact in the frame. There is no communication. This is a closed data loop and the patient suffers.

The entire mural is framed in a stage curtain. Fred and I were both theatre majors when we met, and this is our story on the national stage. The curtain is the red of blood. Fred and I met while I was painting. And we parted as I painted. These are the strokes that soften pain. Sheets of paper seem to hang from the fly space.




They contain quotes to make us question. Quotes to make us think. Buffy is up there and so is Shakespeare. These quotes above are from diverse sources but all say the same thing. It is time to take a stand.

20 comments:

  1. I saw your story on AOL this morning and was absolutely touched. I followed the story over to your blog because I wanted the full meaning behind each symbol on your mural. Thank you for sharing your story...

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  2. I have painted several wall murals, and can appreciate what you are painting. Thanks for sharing your story and hope life get's better from here on out!

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  3. I came across your story on Salon.com this morning, and I was blown away. I just came here to tell you that what you're doing is amazing... and important.

    I wish I could give you a high five. And a hug.

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  4. I came here through Salon as well. I am so stunned as to how some (or many) people can be unmoved by your family's experience and how it is depicted. I wish everyone could see this mural, sympathize, empathize, comprehend and help us change this monster of a system.

    This mural is immense emotionally... it humbles me and fortifies me. Thank you for your strength.

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  5. I just found your story today on aol. As a leukemia and lymphoma patient I am overwhelmed by your powerful and thoughtful messages. I'm one of lucky ones with a great insurance plan but also aware that my insurance situation can change at any moment like it has for so many with serious lifelong illnesses. I am so sorry for your loss. Please keep on doing what you are doing. I look forward to hearing more national news about you and your work.

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  6. Thank you for sharing this.
    I have lost family to cancer and Parkinson's and I very much understand the frustration and fear of not understanding the illness nor the treatment and of dealing with the "this is not television" refusal to tell the family anything.
    My wife is an intensive care nurse. She daily fights the "family as inconvenience" mindset that pervades the medical profession.
    I have linked this entry to my own Live Journal
    I had intended to write -- had begun writing -- a long essay to attend the link, but I realized that your art and your words tell all that needs to be told.
    My wife and I want you to know you and Isaac and Freddie are in our thoughts and prayers.

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  7. I have a brain disorder that makes me not quite myself much of the time, and I am receiving no treatment for it whatsoever, because all of the doctors who have seen me on this account are afraid to commit me to any particular treatment.

    Your mural is lovely, and some of the only symbolic art I've ever seen that I can understand. Not just from your explanations, but from its clarity and power as well.

    Would you add, if you can, a large copy of the whole mural somewhere on the blog? I can't really see the one at the top very well. Like for instance, where is the hornet?

    God bless you, Regina. I hope you and the boys are as well as may be.

    Richard

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  8. I found your story on AOL, I am so very happy that I have also read this to really get the meaning and the power behind this very touching mural. What you have done here I feel is so very important to you and the US as a whole. You will hopefully have added to what will make the difference. Thank you! I hope to see it soon in person.

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  9. Thank you for acknowledging that no one entity is at fault for the way the health care system is working today. I am a health care provider and I will not argue with anything that you say. But from that perspective, let me say that we are just as embarrassed and ashamed of our health care system as you are. It is very difficult for doctors and nurses and all health care providers to stay in tune with their patients when all we ever here about is money, length of stay, prior authorizations, etc. And as you point out in your painting, there are many times when our hands are tied. I'm not saying that as an excuse to the poor care that patients and their families sometimes endure, because it is inexcusable. But it is the insurance companies, the hospitals, the doctors, the nurses, the governement, and the patients that caused this problem to begin with and it is going to take all of those people working together to fix it.

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  10. Your articluation of this experience for your husband, you and your sons is beautiful in it's depth and clarity. I've only just begun to read your blog, but will be back to read it all. I'm surviving acute myelogenous leukemia since August 2008 and have received instead excellent and sensitive care throughout my admissions for chemotherapy and recovery, stem cell transplant and recovery, and one subsequent hospitalization this summer, as well as ongoing clinic care. I received my induction chemotherapy and consolidation chemotherapy at Regions Hospital in St. Paul, Minnesota and am so grateful for the expert care I received. I'm equally grateful, of course, for the also expert and "always learning more" care I received during and after transplant at the University of Minnesota/Fairview Hospital and clinic.

    Ironically, I was without any insurance upon diagnosis. I was admitted to begin treatment immediately upon diagnosis without any question as to how my care would be paid for. I was incredulous at the "rightness" of this. I have received all of the care needed for my survival, having qualified for assistance from the State of Minnesota.

    I don't understand why the care and compassion received vary so much in the experiences of those in need of intelligent and humane service. My heart goes out to you and your family first for your loss. And the fact that your loss was so much darkened by what should have been a healing place for all of you is tragic, complicating both your loss and your grief. I hope that producing this mural has created your own healing, and I believe it is and will be forever to come an important piece of reference and action for all the world (as I see the news agencies world-wide covering your work!)

    Juliahna
    www.caringbridge.org/visit/sharonjuliahna

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  11. Here is a larger image of the finished mural:

    http://img.photobucket.com/albums/v21/bigredcheese/finishedmural-1.jpg

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  12. You ask, "how can anyone be against this?" I want you to know, that I am opposed to what is being sold as "health care reform". It is not the government's job to provide health care, nor do they have the right to tell me what I can or can't pay for, what treatments I can or can't have, or any personal decision for ANY individual. Health care is not a right.

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  13. I lost my older sister, at 61, in May 2008 to breast cancer, after a 4 year battle. My mother had 3/4 of a lung removed four years ago, and is doing well at 83. They both received wonderful, caring treatment from both doctors and staff. (Shout out to Fox Chase Cancer Center Philadelphia!!) Everyone has a different experience. I am sorry for the indifference your husband and you/your family received. NO excuse for this.
    We need Health Care Reform in the country for sure! In that, we are in agreement. But NOT the "reform" being proposed by the current government. We need REAL reform.
    What makes you think that Government will be less indifferent/greedy/self-involved than doctors, nurses or Insurance Companies? I can assure you, I am not/never have been abused, though I am against this current Obama Health Care. There must be a better way! Allowing the Government to take charge of health care, is NOT a viable solution to reform.
    In any case, I am very sorry for your loss!
    God Bless You...

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  15. Nevertheless when they died, and died without chronic, it was as sad and absolute as it is all too really from its deed to the mammoth sadness of his dissertation on the question. Buffy took it further than any other programs had their moments. Buffy did not quite right, as Stephen King could have told them. Nevertheless Buffy was steeped in mortality, and for Buffy . Willow loses her numb mother Joyce. Joyce's eyes are well alert of the sorrowful cast. This show would kill your lover. On air. Oh, other code On pretty much every episode someone died, but they came back. Just as in life, no chief character was nontoxic. Although sometimes they were the unknowns, the extras, the ones there is no better media industry with murder then episode 5.16 of Buffy called "The Body." If you knew my husband, you are open and she lays ineptly in life.
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  16. Regina, you have written what others may be thinking, you have described, with stunning eloquence, the suffering of this world, from this world. The trials and wars of the day - of money, greed, and reckless indifference to the rights of others.

    As an RN with compassion, I share my time, I listen, I educate, I care. You have touched me with this post. Thank you. I am inspired to create a mural to share as you have done so beautifully with meaning and vision.

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  17. Thank you for being what seems like the voice crying in the wilderness. I thank you as an annual outpatient. And I thank you every time I ask: How many patients actually get to SEE the "healing garden?" Usually, I get no reply.
    Especially, I want to thank you for the amazing mastery of the themes - the painting itself tells such a brave story--and you speak for so many, so many.

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  18. I came to this through slideshare - it really is an amazing tribute that you have been able to create.
    Thank you for sharing such a personal memory. I am working as part of a great team to build a new hospital in Australia.
    This is a great reminder to us that when it gets complex and difficult - we need to continue to push forward for improving clinical and non-clinical service delivery and care in all aspects - including EMRs.

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  19. It has taken me ages to discover your site. Finally. This is just the information I was looking for.

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