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Saturday, December 26, 2009

Living in a rough sketch

Do you paint or draw? Do you plan ahead and plot the course and then replicate these designs on a grand scale? Or do you sketch it out in the rough, and then begin to paint; accepting any happy accidents or organic changes as they come? I began 73 cents as a design rendering and then began to sketch it upon the brick wall. I wasn't happy with this method. I instead began to paint it in its entirety in little pieces. It was almost like one of those magic drawing books I got as a kid. I would rub a quarter or a pencil over nothing and then parts of an elaborate drawing would appear. What magic! Life is like that sometimes. It doesn't always work out like you planned and you finish parts of the picture at different times.

I got to know Fred in scenic painting class in 1992. He was taking the class for graduate credit. He could take either costume construction or scenic painting. He thought painting would be easier. I remember him using the words "blow off" class... I was a second year freshman barely passing my classes, but pretty good at painting, so I enrolled in it as well. Every week we were assigned to paint a 5'x5' canvas. The rest of the class would come and go all week and get it done gradually. Fred and I both liked to procrastinate. Each week we would show up at nine or ten. We would paint all night. I got to know Fred by pulling all-nighters with him for months. There is no better way to get to know the real person than pulling all-nighters.

Have you ever pulled an all-nighter? You aren't exactly chipper and bright are you? Fred would show up dressed in Metallica sweat pants. He would be wearing an Anthrax t-shirt under a magenta dress shirt. The ubiquitous walk-man tape player would dangle from his pocket. He listened to hard rock so loud I could hear it from ten feet away. I would paint silently. He would go on and on about news from Entertainment Weekly and Premiere. I would paint silently. He would frantically gesticulate while painting and quote ALL of the movie Star Wars from memory. I finally set my brush down and said in my most put-upon voice, "You are a walking advertisement for the entertainment industry!" He looked at me with his infuriating smile and said, "I take that as a compliment." Back to work he went with a jaunty step and that silly smile. I was furious.

I threw a sponge at him. It was a wet sponge. He got rather wet. he,he, he... A little later he came over to me with a can of Pepsi and poured liquid all over my head. I could not believe he drenched me in Soda! (It turns out he didn't. He had replaced the soda with cold water, but wasn't going to tell me.) I was doubly furious. It was full on wet sponge war at three in the morning on the Main stage. We finished our rather splotchy paintings and went our separate ways; for about thirty minutes as we had class at 8:00 am. Any third grader could have told us... we were falling in love.

We finished the semester and went to our homes for Christmas. After a few days without Fred, I missed our fights. I called him up when he was back from break. I asked him if he would go with me to a party to Peter's house. He said, "Sure, I will drive you. I know you don't have a car." The minute we got to the party he went in the other room with the guys and talked about the God-Father Movies. Peter played dance music. I asked Fred to dance. He said, "I don't dance." I was running out of ideas... Fred asked me if I would like to see the movie "The Fisher King" at his place. I said yes. We went to his place and began to watch "The Fisher King" He began to tell me all about the actors and the director. He was talking a mile a minute. I kissed him. He got the hint.

We were engaged two months later. We were to be married on December 26th 1993. We were so poor. I sold all my comic books to pay for the wedding invitations and Fred sold all of his comic books to pay for our rings. He was a DC fan and I was Marvel so it was a rather rocky engagement. But hey, we liked to argue! I wore my mother's Wedding Dress. Fred wore a nice suit. Poinsettias were the wedding Flowers as the Church was already decorated for Christmas. It was beautiful wedding. That was sixteen years ago.

We never had a honeymoon. We were too poor. We said we would go on one of those cruises or something for our twentieth anniversary. We never had anniversary gifts. It seemed a bit greedy with our anniversary the day after Christmas. We would go out each year for dinner and a movie to celebrate. Fred and I loved this yearly date. Most years of late, we would see Harry Potter. Fred was so disappointed last year when the Christmas release of "Harry Potter and the Half Blood Prince" was pushed back to July. He joked, "I guess we will celebrate in July this year."

In July, I hired a baby-sitter and went by myself to a movie for the first time in 16 years. I watched "Half Blood Prince" with tears streaming down my face. Fred would have liked the movie.

So, here I sit on my 16th wedding anniversary. I am living in the rough sketch. I am not sure what is coming next. It was about this time in 1992; I realized I missed that zany guy named Fred... and I still do. I watched the "Fisher King" again not to long ago. It was a perfect first movie for us. It has a great message. When the love of your life dies it is okay to go a little crazy, but it is important to help others along the way. If you are torn up by grief and remorse, do not give up hope. You can change things. I doesn't matter if you are a shock-jock, a professor or an artist ... you can make the world a better place.

Saturday, December 19, 2009

Inside Voice and Outside Voice

I have always been blessed with a loud and booming voice. As a child I would often get report cards saying, "Regina does not know her outside voice from her inside voice." My husband also received report cards like this. (Our children are doomed.) This statement often confused me as a child. I wondered how the teachers new what I was thinking in my head? I did have a tendency to say whatever I thought. I still have that problem as an adult. I guess now-a-days it would be called filter failure. I once was in business meeting when one of the men at the table said, "Your mouth opens and words just fall out, don't they? My wife is just like you." I don't know if that was a compliment or not....

Anyway, going back to the concept of projection. When I was in third grade, I was cast as the lead in our elementary school musical. I was the Witch in "The Witches Brew." This was a big part with lots of singing. I was so excited I got the part, especially since ... I couldn't sing. What I mean to say is, I could belt out the songs; but had absolutely no sense of pitch or tune. So imagine my joy and surprise at being cast! I loved to sing; I just wasn't any good at it.

A few weeks into rehearsal, I accidently over-heard my music teacher talking to another instructor. She told the other teacher, " Yeah, Regina's singing is horrible! I cast her because she is LOUD. It is more important to be heard, then to be able to sing." I quietly slipped out. It was very hard to go to sleep that night. I wondered if I could go on stage, in front of all those people, knowing I was terrible. I decided to concentrate on the good part. I was loud. I would be very good at being loud.

This is an important lesson to learn in life. We cannot change a lot of what happens to us, but we can choose to always look on the bright side. Even when you are hit by tragedy, you can decide to take on the world and make it a better place. I may not be a good singer. I may not be a very good artist, either. But I am loud.

Sometimes it is more important to be loud. It helps to get the message across. As we say good bye to 2009, I am very glad I was able to use my voice to promote health care reform, patients' rights and data access. And even though I am a terrible singer, I sang briefly on NPR. My music teacher would be so proud.

So next time you think you aren't good enough to add your voice to the public debate, think of me. I was only a retail sales clerk , pre-school art teacher and part-time muralist. When the message is important, God doesn't care if the trumpet is shining and bright. He doesn't even care if it is in tune. He just needs it to be loud.

Wednesday, December 16, 2009

Giving Thanks in 2009

Isaac and Freddie
Originally uploaded by Regina Holliday
I remember New Year's Eve Day 2008. I was at the Toy Store. I was finishing up for the day and told Steven, the store manager, that I could not wait for 2009. I said 2008 was so bad it must get better in 2009. Steven just looked at me and said, "2008 was great for you guys. Freddie got to go to Ivy mount and Fred got his dream job at AU." I suppose it seemed from the outside that I was complaining for no reason. But 2008 was very hard.

In 2008, we got the test results for Freddie that said he had high functioning Autism. We had to make a choice to fight for placement in a special ed. Program. In special ed books, they say it is like planning a trip for Paris and ending up in Iceland. Iceland can be a very nice place, but is a shock to give up your plans of Paris. Fred took it very hard. We went to family counseling for 5 months and paid out of pocket as we were not insured for this therapist. He was a wonderful Dr. and cut our bill in half due to need.

We were working constantly and in a tiny apartment in 2008. Fred worked 3 part-time jobs. I worked two part-time jobs and one full time job. Fred and I split the childcare between the two of us. We hardly got to spend any time together. We looked forward to a therapy sessions just because we had 30 minutes to eat lunch on the doctor's stoop before we would meet. It was great. We called it our date. We would eat gas station hot dogs and just talk to each other.

In the summer of 2008 Fred got word he would be hired by American University in the Fall. We were so happy. I went to part time at the toy store and Fred began work in two departments at AU. He was very tired and frustrated a lot of the time. He couldn't understand why it was so hard to do his job and why he had so little energy; but he buckled down and worked hard. Most of his students loved him.

The fall came and went. Freddie missed his old friends from his old school. Isaac seemed to be doing well in his two year old class at CCBC. I juggled childcare and two jobs. Fred finished his first semester at AU. By New Years, I was pretty worn out. I left the store on new Year's Eve and went by CVS and bought a can of Fosters Beer. I thought Fred and I could share it that night.

When I got home Fred said he just wanted to go bed he was too tired. We would celebrate with Fosters some other day when he felt better. And so began 2009....

In January, Fred began to teach again. He his chest hurt. He went to the ER and they said it was cracked ribs from coughing.

In February, everything got worse. We were all sick with a very bad cold. Our computer was fried by a virus and while we were trying to drop it off at Best Buy our car died in the lot. This was Valentine's Day. Fred and Freddie rode in the Tow truck to The BP station (Where the mural is now). I pushed Isaac in the stroller. It was raining and I was sick with a cough. THe CCBC auction was on the 21st and coughed through drawing 100 children's portraits. Fred was without a home computer so, in pain, he would go each night to his office at AU and respond to email, do Blackboard and Facebook. We began calling February "Cursed February." Fred kept going to his doctor and she kept giving him pain pills.

In March. Our. life. fell. apart. On March 27th we found out Fred had tumors in his kidney and his abdomen, by March 29th we would know they were in his lung's and bones. I would sit in front of a computer screen at 4:00 in the morning researching his disease. They all said the same thing... Fred would only live for a few months with his state of the disease. I read this alone and no doctor would talk to me. No one would tell us truth. On March 31st we celebrated Fred's 39th birthday party.

In April, we would celebrate Easter in Fred's Hospital room. We hid 48 eggs for Isaac and Freddie. Fred watched them find them. On April 19th Fred's oncologist would say he was sending us home on a PCA pump. Fred would tell me to go after them. We transfered to a new hospital. We spend three weeks there.

In May, we would leave the new hospital and go to rehab. This was Fred's last attempt to try to get better. He endured so much pain. He tried to sit while his spine was dissolving. My birthday was May 10. we had a hornet in the room. I ended up killing it. Freddie says it was one of the only good memories of Daddy's cancer care. By late May Fred was failing fast. We would decide to go to hospice. Murch and St. Paul's Lutheran Church would host a rummage sale for us. I would place the first mural.

In June, Fred would be in Hospice until we got into a new two bedroom apartment. W e moved on June 10th and Fred came home on June 11th. When Fred and I were engaged back in 1993, we had a engagement photo taken and had it put in a grand frame. Then we left it at our in-laws house until we had a place nice enough to hang the picture. For the first time it hung in our apartment on June 11th beside Fred's bed. Fred lived for 6 more days and died on June 17th.
There the year stopped. Everything thing that has happened since happened to some one else, because part of me died that day. On June 23rd I began 73 cents.

Since then I have never stopped thinking of Fred. I have never stopped fighting for the rights of people like Fred. We only had less than three month together after March 27th. It is hard enough to be dying. We should not have suffered so. No one should suffer so.

It has been a very hard year, but I am thankful. I am thankful for my two precious sons who look at me with Fred's Eyes. I am thankful for all the great people who came and helped us in our time of need.

I thank the BP station, Pumpernickels and The American City Dinner for the Walls they gave. I thank Christine Kraft who introduced me to Ted Eytan, Claudio, Susannah Fox, Cindy Throop and Epatient Dave. They have all been stalwart friends. I thank the reporters who came to the Mural and spread the word about how much we need medical records access. I want to thank all the families, students and Staff at Towsen, American University, CCBC, Ivymount and Murch Elementary who helped us so much. Thank you too to all the Folks in Western Maryland who fundraised for us. Thank you to St. Paul's Lutheran in DC and St. John's Lutheran in Accident. Thank you to my primary care Doctor and all the medical personnel who tried to help us.

I want to thank God. For in our darkest hour he stood beside us. The spirit of the Lord uplifted our soul. Never doubt there are miracles. We are living in the miracle.

This New Year's Eve I will open that can of Fosters that still is sits in our Fridge. I will toast Fred and 2010. i miss him. I love him. The world will never forget him. He was a good and kind man. He deserved better, as do we all.

Saturday, December 12, 2009

Social Media on the Titanic: RT @Titanic #ICE BURG ahead :(

From the movie Titanic (1997)

Ruth: Will the lifeboats be seated according to class? I hope they aren't too crowded.
Rose: Oh mother, shut up! Don't you understand? The water is freezing and there aren't enough boats. Not enough by half. Half the people on this ship are going to die.
Cal Hockley: Not the better half.

I have been thinking a lot about Titanic these past months. Fred and I loved that film. We saw it three or four times in the theatre. It had everything: art, tragic love, action adventure and amazing special effects. As I worked on the Mural "73 Cents" in August, I thought of Titanic. I was often asked, "Why do we need to fix our health care system when it is the best in the world?" This statement reminded me of Titanic. It was the biggest and best of its time. It was the unsinkable ship. It was was grand and out-fitted with the best that money could buy. Amongst all the fine things on the Titanic, one of the most important things was unfortunately ignored: the wireless telegraph.

Charles R. Pellegrino, who writes as an authority in such diverse topics as entomology, forensic physics, paleogenetics, preliminary design of advanced rocket systems, astrobiology, and marine archaeology, wrote quite a bit on the topic of Titanic. I was intrigued by his depiction of the wireless operators. There were Macaroni operators on Titanic. They were paid to send message to and from the mainland for the well-to-do aboard the Titanic. On Sunday, 14 April 1912 while working on and endless stream of personal messages the Titanic operators were hailed by the wireless operator of the Californian at 23:00 hours. He was trying to warn them of ice floes in the water. Now wireless telegraph was a lot like Twitter: Only 140 characters & broad spectrum communication There were a lot of messages coming in and the Titanic operators were sending messages @Cape Race. This tweet from the Californian @Titanic was really messing with the Tweet meme. So to paraphrase in our modern idiom the Titanic operators tweeted: @Californian Shut up, Shut up, I’m working @Cape Race. So the operator on the Californian soon turned off his wireless and went to bed. In about 10 minutes Titanic struck an ice burg. The Californian was only 4-5 miles away; but without the wireless communication they had no idea that Titanic was sinking. The Titanic wireless operators sent out the QED 35 minutes later and the closest wireless communicating ship was the Carpathia -58 miles away.

My point, you wonder? The massive Hubris of the Titanic was not what killed 1,517 passengers. The real problem was not realizing the importance of the communication technology available at the time. The entire catastrophe could have been avoided, if the wireless operators had sent the ice floe message to the bridge. In all fairness, the real-time wireless connection did end up saving 706 mostly first-class passengers who made it onto the life boats. Ironically, these same passengers had sent all those personal messages that had filled the wireless spectrum. I talk to a lot of people who think Twitter is for mindless chatter, and it can be used for that; but talk to the folks who used it in Iran during the election protests and they will disagree. I speak to people who don't think we need a fully accessible and transferable EMR, and I then think of the nursing home residents who needlessly died after hurricane Katrina for the want of EMR/PHR access.

In closing, I wanted to let you know there is a new hospital to visit in Western Maryland. According to their web page: "The new Western Maryland Regional Medical Center has officially opened our doors to begin providing tri-state area residents with comprehensive health care services in one centralized location on Willowbrook Road in Cumberland. This state-of-the-art facility rises seven stories into the sky, has 275 beds, and covers 585,000 square feet of interior space.

Years in the planning, the new Medical Center was designed with patients in mind. Bright, spacious rooms have plenty of space for family and visitors. Nursing workstations are located just outside patient rooms so nurse can be close by. Free valet parking on weekdays and plenty of additional parking in our 955-space parking garage."

Their site does specify that this State of the Art facility has WIFI, but when I called to ask them about whether this was an EMR hospital. The customer service rep had no idea, nor did medical records personnel. A nurse on the floor finally told me they use mixed paper records and computers. I asked about patient access to their data. I was referred back to medical records, where I was told that for 73 cents a page I could get a copy of my medical records....

@Western Maryland Regional Medical Center #ICE BURG ahead.....

Friday, December 11, 2009

Medicine in the Matrix

"That's part of your problem, you haven't seen enough movies. All of life's riddles are answered in the movies." —Davis (Steve Martin), Grand Canyon, from Frederick Holliday's e-mail signature

Fred taught me how to look at movies: to appreciate them as stories and as commentary on our world. When Jen McCabe asked me design the art on a jacket for her to wear to conferences, I thought of the Matrix and how much it applies to the world of health and health IT.

If you do not work in medicine or have not been touched by medical tragedy or chronic care, you are living in the matrix. You have a regular life where talk of EMR and PHR and HITECH may not mean much of anything. You might not even be aware you currently have to pay to get a copy of your medical record. But those of us who have been touched, know we are trapped within a Data-stream. When a medical tragedy occurs time stops. The matrix goes on and you are no longer part of it. You stand outside. You have fallen through the rabbit hole. Do you want to take the red pill or the blue one? Or like a good epatient to you go and find out what in the world are they asking you to take?

Sunday, November 15, 2009

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.

Friday, October 23, 2009

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 29th 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.

Wednesday, October 7, 2009

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.

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.

Tuesday, September 1, 2009

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:


Thank You and Goodnight,

Sunday, August 9, 2009

There is more to this story....

I want to thank everyone out there who is spreading the word that the health care system as it stands today must change. I want to applaud your hard work and dedication. I want to thank you for reading our story and becoming inspired to do more to help. I am saddened to see so many posts from people against this bill attacking me and my husband. We were not "living off the system." My husband didn't "decide not to have tests." We didn't put "owning a house over our health care."

We were like many in America desperately trying to keep our head above water. We lived in a one bedroom apartment as a family of four to live near a good school so our children could have a good education. My husband and I were working at five different jobs, and we juggled our schedules so we could take care of our children at home. My husband tried for years to get a position at a university. He adjunct-ed at many different schools and worked on getting papers published. I worked retail sales and during Christmas season would work 12+ hour days. We were not soaking the system.

The detractors are right though about there being more to this story. Our story isn't just an insurance story. Our true dismay about the medical system began once we were insured. My husband went to the doctor for three months and got only pain meds before diagnoses of kidney cancer (via an MRI I demanded). My husband was injured again and again while hospitalized due to the staff's lack of awareness of the extent of his disease. Paperwork was routinely lost during transfer. Each time we transferred he was without pain relief for 6 or more hours due to admissions paperwork. The doctors were often too busy to talk with us, and in one case a doctor was heartless and cruel, promising a surgery that never came and sending us home to die. Due to my husband being bedridden we were virtually imprisoned in a hospital not of our choosing. We had to fire the primary, the oncologist, and force transfer to another hospital in order to get a second opinion. This process took three days. Don't you think your rights are being trampled as an American in system like this? When we were not allowed to see the medical record at the first hospital I went down to medical records to get a copy. They said it would be a 21 day wait and 73 cents a page. My husband was there for over four weeks. His record was over 100 pages. What about the poor? How can they afford this? How do you wait 21 days when you are dying of cancer? There is no Freedom of Information Act that applies to medicine. We do not have the rights that we should in our current medical system.

The detractors are saying that the liberals are digging up stories like ours. That is completely untrue. When you are touched with a tragedy like this you have to make a choice: you can either walk away and try to live in the fragments of your old life, or you can fight--you can stand up against injustice and abuse. I am painting because it is the best way I know that can make a difference. I will paint our sorrow on a wall for all to see. It is hard to look away. It makes you think. It makes you question. The scariest thing to the status-quo is an electorate that is thinking and asking questions. I am as grassroots as it comes. There is just me on a 20 foot ladder donated by my church. I am using paint brushes I have had for 17 years. I am applying acrylic paint (paid for by donations of friends and strangers) on a wall donated by a gas station.

This is America. We are a community, and when we see injustice we do something about it.

Thursday, July 30, 2009

The Abuse in the Medical System

You may have heard me say before that there is abuse in the current medical system. I am often amazed at the caring citizens I see routinely defend this very broken system. They say: "No Obama-care for me. I like my doctor. I don't see any need for change. It will cost too much. Why should the government meddle in my business?" I wondered why would a caring citizenry take such a stance. When it comes to patients rights you even hear, "I won't say anything. It will only make matters worse if I disagree with my doctor."
A few nights ago I was speaking with the former wife of an alcoholic. As the child of an abusive alcoholic, I could relate to the conditions she described. We were amazed at the parallels between the current outcry against health care and the coping strategies used in an abusive home.

It is not really happening. Many families use a form of denial to live in abusive relationship. They pretend to everyone around them it is not that bad, ignoring the elephant in the room. Saying, "We have a good medical system," these individuals ignore the under staffing, the unhygienic practices, the lack of consultation, the inefficient paper work and the lack of access to patient information. They are so frightened they can see no other option of how to live than their current abusive lifestyle.

It will cost too much. I have known many women in my life who have stayed with abusive husbands because of money. "It will cost too much to leave him. He has the job. He could get the house and the kids." I always council people that the emotional cost is far greater. Imagine the harm to your mind and soul and to that of your children. When a situation has become abusive it is your duty to stand up and make things right. Now, as a nation we are making this choice. What is the harm we inflict to our national soul if we stand aside, and because of money, allow abuse to continue?

Why should the government meddle in my business? The government meddling is called regulation. Regulation can be a very good thing. It has lead to clear nutrition facts labeling, the clean air act, required seat belt use, and other amazing laws that save lives every day. We used to live in a world where it was okay to beat your spouse and kids. Go further back and it was okay to whip your servant. It is now against the law. The law of the land can change things for the better. I am not for big government. I am for best government.

It will only make matters worse if I say anything. We need immediate and real-time access to our medical record. We need this so we can speak out about what is going wrong and take ownership of our medical situation. We need patients to feel empowered to know that their thoughts are valid and they will not be penalized for speaking out. We need patients who will keep talking till someone listens to them. The abused child will often tell more than one adult about the abuse before he is believed and someone acts on his complaint. Patients and caregivers need to bravely step forward again and again to talk about the abuses in the health care system.

It is very hard to break a cycle of abuse and neglect, but it can be done. We must all step forward and say this must stop. We will not allow it to continue.

This quote from the Declaration of Independence is part of the mural I am now working on:"Experience hath shewn, that Mankind are more disposed to suffer, while Evils are sufferable than to right themselves by abolishing the Forms to which they are accustomed."

What does this mean? That we should so fear and dread change, that we accept the current health care system? I think not....

Saturday, July 25, 2009

My Post to Lotsa Helping Hands Community: Regina's Friends

I am sending this out to all the wonderful people who helped our family through our ordeal for the past four month, but I thought I would post it here as well as I think applies to most of you as well.

I want to thank you for all the help you have provided for these past four months. We could not have done it without you. You have been great. Some of you have asked "Is there anymore we can do?" There is. Help me with my fight for health care reform. You can reach me at or http://ReginaHolliday.Blogspot or Regina Holliday Washington DC on Facebook or ReginaHolliday on Twitter.

If you would like to host play dates while I paint advocacy murals or speak with our representatives on Capitol Hill let me know. If you know a reporter who would like to talk about how bad our current medical situation is, give them my contact info. If you have a medical story to share with me about a tragedy that occured in your life please contact me; because I will be doing more murals. Fred's story is not the only one out there. The time to ignore what is happening is over. The time for action has begun.

Reform does not happen overnight, but it will happen. I plan to dedicate the rest of my life to making it happen. I will campaign for patients' rights. I will work hard so no other patient will be virtually imprisoned in his hospital bed. I will demand access to the medical record in real time so patients and caregivers can make informed decisions. I will work toward the standardization of forms so patients will not be unnecessarily harmed due to lack of awareness of medical staff. I will implore medical facilities to adopt an interoperable Electronic Medical Record so you do not lose data upon transfer and so patients do not need to wait for several hours to get their meds back on-line. I will paint murals throughout this city about the ones we loved that died. I will speak to senators and congressmen about the need for affordable insurance.

I will not stop talking until we get change. And if you know me from Child's Play you know I talk a lot. You also know I care about your children and I want what is best for them, whether it is a great toy or good health system. If you know me from teaching art, you know I don't do things by half measure. There is no project that cannot be accomplished if you have dedication, time, and work hard. If you know me from church, you know I believe in God. I believe in a God of mercy and grace, one who says we must help the "least of these." People ask for a miracle in their time of sorrow. God is there all along trying help us listen to His call. The miracle is in us, and it is up to us to do everything we can to help the sick, the tired, the dying, and those filled with sadness and despair. I will do everything I can to help and I hope you will join with me.

I have been blessed by this community of friends. I am sure together we can do great things.

Thanks again for all you have done,
Regina Holliday

Thursday, July 23, 2009

Today I went to a press conference hosted by Senator Reid. We spoke of the great need for health care reform. I shared the experiences Fred and I had within this very broken system. Our son Freddie was also present and provided emotional support. I am posting my comments here:

"When I met my husband of fifteen years he had a dream. He wanted to teach film studies at the university level. He went to school for many years and got his Phd. My husband Fred Holliday soon became Doc Holliday. He began to adjunct at many universities and worked as a video clerk. I worked at a toy store and taught art. When we were not working we cared for our two children; three year old Issac and ten year old Freddie. In the 2007/2008 school year My husband and I worked five different jobs between the two of us and still could not afford family health insurance.

n August of 2008, My husband's dream came true. He was hired by American University to teach film studies. He was so happy. He was such a great teacher. Now, we could finally afford family insurance. In January 2009 he began going to the doctor because of pain in his chest. In February the pain went to his back. He no longer could carry his books and papers to the classes he taught; so he began using our son's rolling backpack. By March the pain was so severe we demanded an MRI.

On March 27 at 11:00 am my husband was diagnosed with Metastatic Kidney Cancer. He was in stage four by the time of diagnoses. My husband was hospitalized at five different medical facilities in a three month period. He suffered through 40 ambulance transports to receive radiation, had repeated and unnecessary tests, routinely had delay in pain treatment due to lack of data access during transfers. After suffering in a health system more concerned about quantity of care over quality of care, Fred died on June 17th at the age of 39.

Would access to an affordable family insurance made a difference in our case? I think so. If my husband could have seen a primary care doctor throughout the past ten years there is a very good chance this cancer could have been caught before stage four. If there had been consistent follow up to the ER visits we have made as an uninsured family, I think some one could have looked at all of his symptoms in combination and ordered the tests that would have discovered the cancer. If an electronic medical record was in place that could have followed my husband from ER to health clinic to specialist, a red flag could have been raised that this patient needed more treatment.

My husband was a dreamer. He dreamed he could make the world a better place by being kind and thoughtful. Our current medical system with insurance tied to a job makes it very hard to be insured in many professions. The time has come to make hard choices. Do you want a world without musicians, artists, actors and teachers? Do you want to give up on dreams? Or do you want do everything in your power to fix a very broken medical system? I know this is very hard time for many people. The economy is bad, things are uncertain; but that is no reason to turn away. If we all work together good will come of this. My husband did not die in vain. We will change things."

Go and spread the word. The time for change is now.

Tuesday, July 14, 2009

DC Fox 5 interview

I was interview by DC Fox 5 news today. They showed the mural as well as asked me some questions about health reform.

Friday, July 3, 2009

The Last Time I saw Elika

I want to post a poem I wrote while Fred was hospitalized.

I was blessed to know a wonderful woman named Elika Hemphill. I helped her at Child's Play the toystore for many years. I was so excited to see her become a involved parent at my son's school. I watched her fight her first round of cancer while taking care of a family. When she went in remission she came by the store one day and asked me to paint a mural of her children's faces on her fence just like my work at American City Diner. I said I would as soon as my schedule freed up. My schedule did not free up in time for Elika to get her painting. She came in the store on June 25th 2008. She was in a hurry, but I asked her if she would like to enroll her children in the art lesson I was teaching the next day. She said yes. She came even though she had received devstating news. Her cancer was back. She died in the fall of 2008.

Here's to Elika and Fred.

The Last Time I saw Elika

The last time I saw Elika,
Sunlight-Shining Elika,
She sat on the bench and looked away
And as she sat her children played.
They painted cherry blossom scenes
And she looked upon them in between.

The day I heard, oh Elika,
Michelle told me, oh Elika
The cancer's back and now has spread.
It's gone through her. It's in her head.
Oh no...Oh why? This isn't fair!
But these thoughts, I did not share.

Why not go see Elika?
I could not go see Elika.
I could not bear to think
Her face not now so rosy pink.
Her sunlight-shine begun to fade.
And all the hope is now forbade.

Each time I thought of her I cried
Like some part inside of me had died.
Maybe my heart already knew,
My crying time was coming soon.
That my sunlight-shining day would end.
That I would lose my greatest friend.

She knew she'd die that painting day.
She knew, and she came anyway.
Because it's worth it one last time
To see the sun, to paint, to shine,
To be with children and to show
How much you love them as you go.

-Regina Holliday 4-7-09

Wednesday, July 1, 2009

art as advocacy

Art as Advocacy

On May 17, 2009 in the Washington Post Magazine Deneen L. Brown, in the article "Of Bricks and Beauty", wrote "...Murals have the same claim to your attention. They are telling you that although you may be pulled by your collar on your way to work, or stopped at the red light for longer than you need to be, or stressed by a spat with a friend, there is something bigger than the mundane...Murals vary in artistic quality and intent. But they all shout their belief that art should be writ large across our lives, not stuffed away in books and museums."

This is a wonderful article on why murals are important. They wake you up. They provide beauty in an often bleak urban environment. They are public and open and uncomprimising. "See me", they yell. "You cannot ignore or quiet me. You cannot pretend I do not exist."

This past week I began 73 cents at 5001 Connecticut Avenue. It is a tribute to my husband and to all of the other patients, caregivers and families who suffer in silence. I could not wait to paint Fred's face. He is on a wall now. He is there on Connecticut Avenue with me. His eyes are closed, and he is resting. His beautiful eyes will not open as he lost to me physically, but his spirit is there. I painted Issac older than he is, as Fred was most concerned that he "would not get to see him grow up." Issac plays with the blocks that spell EMR, ARRA and HITEC. He holds the letter "I" as this painting asks members of the public where they stand in the current debate. I am two-faced in the painting. I had two roles: wife and caregiver. My wife face is a mask covering my sorrow. My caregiver face clearly screams my despair and worry. The 73 cents at the bottom of the mural represent the cost per page for the medical record. At this point only 1/20 of the mural is done. It will cover the entire wall, approximately 20x50 feet. I will work on the painting throughout July and hope to be done by the end.

A few days ago I attended the Connect 2009 seminar. The conference was filled with goverment agencies, Health IT professionals, health adminstrators and health advocates. I had an opportunty to ask a patients rights question in front of the assembled. To paraphrase:
"On March 27th My husband was diagnosed with renal cell carcinoma. I began to use the internet to research the disease. Posted daily on facebook to ask for help from friends. Learned to twitter and contacted a renal cell expert in Boston. I used every technology at my disposal to help my husband. How are you addressing a patient/caregiver access to the EMR?"

My question received applause. The answer was basically that patient access is not part of the current agenda.

I am doing everything in my power to change that.

-Regina Holliday

The Medical Facts mural is finished and on permanent display at Pumpernickels Deli on Connecticut Avenue.