Thank You Stephen King for Under the Dome

When my husband, Fred, first saw me I was painting. I was painting letters on a theatre drop curtain. My hair hung long within a braid. I was kneeling brush in hand. I did not see him standing in the fly-space looking down upon me. The first time we ever talked, we stood in front of the old soda machine in the Green Room at OSU. As the old machine hummed its refrigerated whine, I sipped Mountain Dew and spoke of Randal Flag. Fred looked at me with golden flecked blue eyes and quoted the Dark Tower back at me. We fell in love talking Stephen King.

We married and never stopped talking. We were always looking forward to each new King book. We moved many times in our 15 years of marriage, but the first thing Fred always did was set up his Stephen King shelf of books. I called it the shrine. He loved to show friends and guests these prized books. He said if there ever was a fire the books would leave with him. Fred’s house had burned down when he was but thirteen years old: fire was never far from his thoughts. He assured me he would save his books. He said he would also make sure I got out okay… afterwards. Even in Labor with our second son, Fred brought me a book to read, and thirty minutes after delivery I was chewing ice chips and reading Cell.

Last spring, early in the year, Fred could talk of naught but King’s upcoming book Under the Dome. He was so excited it would be a November release of a long awaited story. He briefed me on the tale; the concept: a dome was encasing a small town in Maine and tensions trapped within. So Fred would say his back hurt and teach his classes and talk of Steven King. March came, and with it sadness. Fred had no slipped disk or muscle pull. His back hurt because of cancer in his spine. He lay in the hospital heart-sick and imprisoned in a body and a bed. He turned to me and said, “What if I don’t make it till November? I might not get to read Under the Dome.”

Two days after he learned he had metastatic kidney cancer, Fred celebrated his 39th birthday in a hospital bed. With his feeding tray came the hospital cake sparkling with ice and tasting of freezer burn. A friend gave him the comic book version of the Stand. Our youngest son gave him a Dora Balloon. I decided to try to get him the best gift ever. I could not stop his illness or get answers from his doctors. I could not walk for him or take his pain away, but I could try to get a galley copy of Under the Dome.

I emailed Deborah our wonderful book buyer at Child’s Play- the toy-store where I worked. I asked her to please contact Simon and Schuster and see if it were possible to get a copy. She emailed her rep. Charlie and he contacted Tyler Le Bleu the marketing manager at Simon and Schuster. Tyler cleared the release with Stephen King.

The book came on the perfect day. This was the day the oncologist said we could get surgery. With surgery Fred could live two more years! Two more years he would have watch his sons grow older. In the midst of this rejoicing, I leaned over his bed like a princess in a fable and kissing him gave him the book. He was so happy he could not believe it. “I guess I’m really dying,” he said. “I get my make-a-wish.”

Thank God for that book. Fred took it on every radiation transport in the next two weeks. He read some everyday. The man, who could read a Stephen King book in less than 24 hours before he was sick, spent the next three weeks reading Under the Dome. Pinned in MRI machine double-dosed with Adivan, I would scream the words of Stephen King at him above the train roar of the machine. Fred tried to read many books while hospitalized, but he only finished one… Under the Dome. I guess that makes a lot of sense, for it seemed like we living in a bubble-trapped with those who wished to harm us and those who wished to help…and not sure which was which. I remember the one passage I read aloud to Fred. The character Brenda prays to God after losing her husband. “God, this is Brenda. I don’t want him back…well do, but I know You can’t do that. Only give me the strength to bear this, okay? And I wonder if maybe…I don’t know if this is blasphemy or not, probably it is, but I wonder if You could let him talk to me one more time. Maybe let him touch me one more time.” That is when I burst in to tears and said to Fred, “I told you I would read to you but how can I read that?” “It is okay, Reggie,” he said.. I will read myself.” And he did.

The weeks passed by and Fred grew worse. We left the hospital and went to hospice. We moved into a bigger apartment so Fred could go home to home hospice. For the first time in our life Fred would not move his shrine himself. We moved the hospital bed into the room and arrayed his books all around. He came home on June 11th. He said the books looked nice. Each day he grew weaker and had more trouble breathing. The morning of June 17th two of Fred’s friends came over: Jeff and David. I warned them Fred was not too good today. I could not wake him. They came any way. Jeff brought a book- Lisey’s Story for Fred. I laughed and said he already had it. He had everything by Stephen King. And then I showed them Under the Dome, the secret book: Fred’s prized passion… his make-a-wish. Fred breathing was so labored now. Each breath seemed its own private war within his body. I stood beside him caressing his arm and holding the book. Three minutes later Fred died.

I want to Thank you Stephen King for Under the Dome. I want thank Tyler and Charlie and Deborah. You did a great good thing. You helped me show Fred there was nothing I would not do for him. You showed him there are many people who care. You shined a light in our darkness. We finished our love like we started it…talking Stephen King.

Thoughts on Medicine and Social Media

On Wednesday, May 27, 2009 I met Dr. Ted Eytan. I was invited to present a patient and caregiver view of hospitalization at a small health 2.0 meeting. I saw Powerpoint presentations with bar charts and graphs. I sat patiently taking notes about the state of ehealth and social media. At around 3:15 I spoke. I described the horror of my husband being diagnosed with cancer and of terror of not being told what was going on. I spoke about the fight we had fought to get to get a copy of the medical record. I recounted the numerous times I had used the information in his record to improve his care. The record sat upon the table in a three inch thick binder. There was silence in the room. We were no longer speaking in the abstract about patients. They asked me to focus on what was the worst thing that had happened through this entire tragedy. I told them the worst thing we experienced was lack of access to my husband’s data.

On March 27 my husband, Fred Holliday, was diagnosed with probable Renal Cell Carcinoma. Within one day, I became an e-patient, a caregiver and a medical advocate. I would use the internet for both research and patient/family support. To help my husband receive the best care, I surfed the internet at night; researching his cancer using Google, reading the Wikipedia entry on RCC with all of its links, and finding personal cancer stories. Facebook became the information source on Fred’s medical status. I would take a few minutes each night to post to the 100 plus people following Fred’s care. Within days of diagnosis, two of my friends had set up a Lots of Helping Hands account. This online network, which rapidly grew to 150 volunteers, would fundraise and provide meals, babysitting and groceries. This pool of helpers was immensely diverse. Before sites such as Lots of Helping Hands, orchestration of a volunteer effort this complex would not have been possible.

My husband was the model patient: he never complained or caused trouble. We were at the first hospital for four weeks with the only treatment being palliative radiation. My husband walked into that hospital but by week two he could no longer stand and could barely sit. We had no chemo or surgery. I wanted to know what was going on, so on Friday, April 17 I went down to medical records to ask for a copy of his chart. They told me it would be 73 cents a page and a 21 day wait. The next day the oncologist came into the room. It was 9:30 AM on a Saturday. We had a list of questions ready. We had questions like: "When will we have surgery?" The doctor had a different answer. “We have decided to send you home on PCA pump.” I found out later that “we” meant the hospital, the oncologist, and the insurance company, all privy to this decision days before Fred and I were. I had done my internet research. I knew exactly what was going on. This was home hospice. Fred was being sent home to die. The doctor left the room. We cried. Then Fred told me to go after them.

We had to suffer and wait that entire weekend, but on Monday I took action. I fired the primary who never visited. I asked my own primary if he would take on Fred. He did and could get him transferred to another hospital. I found an oncology group that said they would see him. I spent three days organizing transfer. Fred’s nurse navigator from his insurance company was so frustrated by how hard it was to complete this transfer that she was crying to me on the phone. I was warned by internist that this was not how things were done. The oncologist stormed angrily into Fred’s room saying, “So you are transferring? Well no one will give you surgery.” He left and I told the head nurse I wanted him barred from the room.

We were transferred on Wednesday April 22. We were sent with incomplete and out of date records. Fred was denied care for six hours while the nursing station tried to cobble together a record. Without a current MAR, they came to me to ask what kind of patch is this and when was it placed? Both Fred’s lidocain and fentanyl patches weren’t labeled or dated. Five days before I had asked for the medical record. If only it had been given to me then, Fred would not have been suffering in pain as we tried to recreate a medical record from memory and a fax machine. The next day I was sent back to the first hospital to get the record. In hour and a half they printed out the entire EMR. I gave it to Fred’s new doctors. They looked it then gave it back to me. They said it was safest with me. Fred might go to many facilities but if I kept it his record it would follow him. I spent the next six hours organizing and reading Fred’s record. I found so many mistakes. If I could have read the record on a daily basis his care would have been so much better.

Each night on Facebook I posted the tragedy of our life. After receiving advice from Christine Kraft, I began to use Twitter. I did this very scary thing to find one man: e-Patient Dave. He was a well known e-patient and a kidney cancer survivor. Within minutes of my tweet we were in contact. We emailed back and forth that night. Then he called. By 10:00 that evening I was talking to Dave’s physician about my husband’s cancer care. I told him about Fred’s current status and my research and concerns. His quiet calm support helped me to face what was becoming very evident in my mind: it was too late for Fred. His current oncologist was doing everything that could be done in Fred’s advanced state of disease.

During all of this confusing and frantic time we were using technology in a different way. We were using it to wrap up the loose ends of a career and a life. When Fred was first admitted he could still stand and walk some. There was a computer room at the end of the hall. If he could walk down that hall Fred could spend a few agonizing minutes surfing the web. He would post to friends and be himself in 12pt font. Soon he could not do that. Fred was a professor of film studies. When he was diagnosed he was still teaching classes. We spent some days getting his class grades compiled. As he was reading one paper, he turned to me and said, “Reggie, try typing a line of this paper onto Google and see what comes up.” I went to the computer room. It was plagiarized. Fred missed the access to the internet and the freedoms it entailed. I got our old laptop refitted for WiFi. Fred was so happy. But within weeks were transferred to rehab and hospice where no WiFi was available. Pain can treated in many ways, with fentanyl, lidocain, and PCA Pumps. But one of the best sources of pain relief for Fred was the internet: access to sites such as Facebook, IMDB and Ain’t it Cool News. So nightly, I would come home and call Fred and log on. I would read him all of his email and post his status. And then we would say goodnight.

On April 29^th 2009, I sent out an email blast to everyone I knew. I was appalled at the care patients receive: the lack of access to data and the lack of coordination of care. I had worked retail since the early 1990’s. Who has heard of a decent-sized store that doesn’t have a POS system? What business provides service without an itemized receipt? And I have yet find a store that charges the customer for their copy of that receipt. I had been a special education advocate for my son since kindergarten. I had been part of many IEP meetings and had read reams of test results as was my right under the Freedom of Information Act. But in my role as caregiver and patient advocate, I was told by medical records personnel if I wanted a copy of Fred’s medical record I would have to paying 73 cents a page and wait 21 days. How can a patient or care-giver be part of the team if they have no access to that data? In my email blast I spoke of all those families and patients who suffer in silence. I would speak for them. I would paint medical advocacy murals on the walls of Washington, DC.

While Fred was in Hospice care, I placed the first mural. The Medical Facts mural as a re-visioning of the face sheet mimicking in style and clarity the nutrition facts label: all important, vital statistics are present with norms for comparison. How do you know your blood pressure is high or your hemoglobin low if you do not know what normal is? Where are the bone mets and the soft tissue mets? Where could you harm this patient just by touching him? Fred was injured twice by techs moving his body who had no idea of the extent of his disease. I asked a nurse, “Who reads the medical record?” Her response was “We read the face sheet and maybe the most recent pages.”

In early June, sitting at Fred’ side, I began drawing the design sketch for the next mural: 73 Cents. This would be a cross between Guernica and Death of Marat with a little Diego Rivera thrown in. This painting would depict our family’s struggle, imprisoned in a hospital where no one is communicating and data is stuck in an internal loop. The figures in this piece would be separated in darkness, and no one would be making eye contact within the frame.

On June 17 Fred died. I was his caregiver for his last six days. In home hospice I was in charge of the MAR that I fought so hard to get copies of in the different hospitals Fred had been in. I was the one who gave him his last meds at 7:30 AM. I helped the hospice nurse roll his body to clean him up for funeral transport, and in so doing, held his still warm body one last time. I hadn’t hugged Fred for two months at that point. It had hurt him too much to be hugged. Now I could hold Fred near and cause no pain.

On June 21 and June 22 I sent another mass email telling everyone I knew I was going do everything in my power to fix a medical system that keeps patients and families in the dark. I would post on Facebook. I would blog. I would Twitter. On June 23 I began painting 73 Cents. In the next two months the painting would receive worldwide press. It would be the subject of blog posts, tweets and the AOL Splash Page. It would make the cover of the BMJ. The world was talking about patients' rights and data access. This was caused in part by paint and social media. If using social media could get our message out to the world think of what could happen if the medical establishment and empowered patients embraced it.

Small Business and Insurance

For many years I had the pleasure of working at Barstons Child's Play. During my time at the store I worked as an assistant manager and buyer. I was a full-time employee and individual employee health insurance was covered. When my husband and I looked at the rates to pay for my husband and two children on the policy, we knew we could not afford it. We could barely manage rent, student loans and food on our combined salaries. We paid out of pocket for medical care for many years for both my husband and two sons. When Fred was hired at American University, as part of a large insurance pool we could finally afford FAMILY insurance.

Part of my dismay at the way insurance is handled in the US is the fact that small business is asked to shoulder such a heavy burden. There is no way Child's Play -a small mom and pop store, could afford to offer the same low group rate that American University could offer. I made the choice to work at a small specialty store. I really enjoyed working there. I could have probably worked retail for a large corporation and maybe found a affordable family policy. I did not do that. In retrospect, Did my decision kill my husband? I guess it did. But do you want to live in a country where we decide where we work based on what insurance is available to its employees? And in such a country, what would happen to all the Mom and Pop Stores?

There is a reason in "73 cents" the small businessman is holding his head at his desk, late at night with a past due notice in front of him. Small business suffers greatly in this country.

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.

To paint for a change....

I once said this would be a brush stroke heard around the world. I did not know how true those words would be. Reporters from the BBC, Al Jazeera, Voice of America and German television have been by to report on "73 cents." Newspaper reporters from Germany, Prague and The Netherlands have come for interviews. I have received emails from an international audience asking questions about health reform. This problem resounds around around the globe. I found out that it costs approx. 88 cents to get your medical record in Germany. Lack of access to records appears to be an international problem.

This week many lovely people came by to see the mural. There was a couple from Chicago, a man from Virginia and quite a few locals. They came to see the mural in person after hearing about it on TV. I asked them to spread the word. Please tell everyone you know about the need for health care reform. If we all act as a positive voice supporting reform, our harmony will drown out the discordant sound of the detractors. There are many aspects to health care reform. If we engage in civil dialogue, we will find common ground. The modern medical system has many problems that need to be addressed. There are those who wish to polarize this debate, and so doing would condemn us all. For the end will not elude us, and in the end we are all patients.

These are two new pieces about the Mural:

.http://www.wjla.com/news/stories/0809/654928_video.html?ref=newsstory

http://voa-intheirownwords.blogspot.com/2009/08/painting-for-health-care.html

Thank You and Goodnight,
-Regina

The mural project covered on CNN

CNN interview

This was aired on our local channel 9 news in DC.

Widow Uses Mural To Portray Husband's Death And Health Care Perils