Thoughts Induced by Chewing Ice

In the summer of 1976, I was four years old. This was the summer Americans were told to go on the road and rediscover America. Our family followed the national advice and began a road trip that would take us from Oklahoma to Kansas, Missouri, Nebraska, Colorado and New Mexico. It was a magical time. We piled into our brand new ’76 Chevy Impala and tasted the freedom of the road. Even though I was only four at the time, two experiences were seared within my mind during those kodachrome brilliant hot summer days.

While in Colorado we visited an amazing amusement park called Santa’s Workshop. Ten miles west of Colorado Springs, they have North Pole experience complete with a Candy Cane slide and the tallest Ferris wheel in the world. I will never forget the moment I rode that wheel. My family peered up at the huge ferris wheel that was built upon a mountain at a 7,500-foot altitude. The wheel operator dared us to ride the enormous structure. My mother chuckled and said she would not, my father laughed as well. I stepped forward. I said I would like to ride. The carny asked if I was sure. Did I really want to ride all by myself? I nodded yes, and was lifted up into the seat. The carny man pulled down the restraining bar that floated eight inches above my legs. I looked around to see, and found I was one of very few people who had attempted the ride. As my seat rose ever higher, my knuckles whitened around the restraining bar. I realized how easily I could fall. I looked at the great space between my legs and the bar and stared at my little fingers pressed so tightly on the cool metal. I looked down at my scuffed canvas shoes as they dangled so many feet above the crowds. As I reached the pinnacle of the ascent, I looked down so far below at my small family. At that moment, I felt so proud, so strong; I alone had braved the ride. I was filled with fear but I would not let it panic or conquer me. I was so glad that I got to do this. I cherished the moment and the trust my parents had in me, that even though I was only four, I could be brave. I was joyous and I was on top of the world.

That was an empowering experience. I floated bravely above for a few moments, but most of life is lived upon the ground. It is just as important to find empowering events within one’s daily life. So my other amazing experience of the summer of 1976 would be considered a boring reality to many, but I still remember and cherish the opportunity to get ice from the motel ice machine. To this day I cannot pass a hotel ice machine without smiling. Have you ever noticed as an adult you must crouch down slightly to get ice from these machines? I have often thought they were designed with a child’s height in mind. When I was four, many privileges and responsiblties were literally out-of-reach. I could not reach the sink to wash dishes or get a drink. I could not reach the dishes in the cabinets to set the table. But as we stayed in hotels, I began to relish my new duty of getting ice. I would take the ice bucket and would run down the hall to the ice machine. I would listen to its calming motor hum, as I would place the bucket on the lever. The rattling clunks would echo inside the machine, as the motor would gear up. The hole above the lever would begin to spew the mounds of ice into the bucket. Hotel after hotel, I would do this ritual and I discovered there were many types of ice. In some motels it would come out as cubes, sometimes it would be frozen rounded discs and sometimes wedge shaped smiles. By far, my favorite ice was the donut type. This ice would cascade out in circles. My sister, my brother and I would eat this ice like it was popcorn. I loved the way it would roll within my mouth. I loved the delightful chill of slipping my tongue inside the hole within the ice. I would press my tongue until eventually the ice would turn thin and sharp, and then I would crunch my teeth upon the shards. I loved chewing ice, but even more I loved the ability to get that ice myself.

So the child I was became the wife that stood in front of other ice machines. Pastel pitchers had replaced the old plastic bucket. I had lived much in the 33 years between hotel ice machines and hospital ice machines. I had married, given birth, managed stores and was well acquainted with both responsibility and privilege. So as I begged for access to information and asked how I could help my husband, I was handed a plastic pitcher and given the one duty I could be trusted with. I could get him ice water. Each day, many times a day, I would get Fred ice. I would leave the room and carry that little pitcher down the hall and fill it up again and again. I grew concerned as time past that the facilities did not replace nor clean the pitcher.

In the first hospital we had the same pitcher for two weeks before it crashed upon the floor and shattered. It was then replaced. Fred went for another two weeks with his second pitcher. It was a mauve pink pitcher and I took it home upon discharge. (It became my water bucket while painting 73 Cents.) At the second facility, Fred again was given a plastic pitcher. After a week of using it, I came to the hospital one morning to find a black substance inside the bottom of the pitcher. I showed it to the nursing supervisor, she alerted other floors about the potential for patient harm. While Fred was hospitalized, we saw that facility take steps to discontinue use of the re-useable, yet never washed, plastic pitcher.

So as Fred grew more ill, I often thought of ice and ice machines. The first thing I would do each day was to get him ice. The last task before leaving his room was to check and see if his pitcher was still filled. It made me sad. Sometimes I too, would drink the water and chew the ice. I would think of the ice I sucked upon while I labored before the birth of our two sons. I would think of the happy anxious father who would eagerly go down the hall to get me ice chips. He was so nervous he practically bounded down the hall. I chucked through the pain of childbirth, upon seeing his behavior, but at least that duty made him feel useful.

Those are thoughts induced by chewing ice. Eventually thoughts like these grew into a blog. Eventually they were shared with anyone who would like to see them. On December 12^th I wrote of ice. I wrote about the ice that chewed the bowels of a very important ship. I wrote about what medicine can learn from events within our past and the importance of wireless technology on the Titanic. The blog was called: Social Media on the Titanic: RT @Titanic #ICE BURG ahead :(

Because of that post I met an amazing man known as the Ice Chewer on Blogger and Twitter. He posted this comment:

I feel grateful that you are writing this blog. Our inefficient health care system manages to stay this way because patients and families, at the moment when they are most vulnerable, have to spend their emotional resources dealing with unilateral and arbitrary decisions of hospital administrators, insurance companies, and doctors. And that is how we lose our energies to fight for change. But seeing that you and others who went through a terrible experience are not giving up, gives us all some hope and inspiration to fight. Thank you!

By the ice chewer on Social Media on the Titanic: RT @Titanic #ICE BURG... on 12/12/09

12/12/09 http://icechewer.blogspot.com/

That is how I met Yuval Sheer. He lives in New York and writes a wonderful blog that reflects upon life and art and, of course, chewing ice. In the classic sense of knowing someone by meeting him in person, I suppose we have yet to meet. I feel as though I know ice chewer through his quirky writing, interesting photos and the amazing artistic interpretations of created by his dear Mettookonet.

The ice chewer has posted comments on my blog 10 times and we also touch base on Twitter. In July, I was honored to receive a precious copy of his limited edition book: “Thoughts Induced by Chewing Ice.” It is filled with many posts of wisdom and makes me wish I could be far wittier than I am. The ice chewer writes with wit and humor as he chews on cold ice. I blog of pop culture, health and my family with deep emotion and often hot tears. We both use photos and art frequently to make points within our posts.

My favorite page within his book depicts an artist painting an I-phone at an easel. This page was based on a post from November 5^th, 2009. The text of the post was as follows; “I took a photo with my cell of a man hanging his photography work on a wall at the subway station. He got angry and told me: "good luck with your non-creative life”. So I got creative, and blogged about it.” -posthttp://icechewer.blogspot.com/2009/11/good-luck.html

I love this statement. It is not enough to only paint. There are many types of artists and art, just as there are many types of ice. It is the thoughts induced by chewing ice and art that lead to innovation. Those thoughts can lead to change, to action. They can create a new hospital policy. They can lead to a change in national laws and they come from a willingness to share and contribute to the whole. Thank you so much Yuval Sheer for sharing your thoughts with me. Thanks for placing a picture of an artist on the 73^rd page of your book.

The story matters, whether it written on 73 pages or paid for with 73 cents. I am glad I can share that story. I am glad I can bring it all to the table and present the patient voice. Little girls who ride Ferris Wheels can grow up to be brave women who climb high ladders and share sorrows for the entire world to see. Those women can meet brave men who share their vision and realize that every event and every person is important. These are the thoughts induced by chewing ice.

A poem to the Yuval Sheer:

I wrote about an ice burg and he found me.

In darkness, I swam upon the sea of data.

As the code and cold lapped upon me,

I wrote of the Titanic and of Twitter

on a cold December day.

And met he who chews the ice.

A Gallery Show on November 22nd at Politics and Prose: Showing Mommy’s Art in Daddy’s Library

Did I ever mention Fred was for the most part a stay-at-home dad? Yes, he was an adjunct at three universities and worked part-time at the video store, but otherwise he was with the children. When Isaac was a baby and Fred would have to wile the hours away taking care of an infant, he would often strap Isaac into a front-pact baby carrier and go to Politics and Prose. Politics and Prose was Fred’s favorite store. He would spend hours there. As Isaac grew, Fred would place him first in the backpack, and as time passed, the stroller, and off they would go to Politics and Prose and divide their time between the film section and the mouse hole in the children’s section.

This was Fred and Isaac’s routine for three years. Then in March 2009 Fred became ill. Fred could no longer visit bookstores. I would bring books to him instead. On his birthday, I brought him three books from P&P, and due to his intense pain and his pain medication, he would never finish one of them.

When Fred died in June, we received many letters of sympathy, but one letter I treasure the most came from a P&P bookstore employee. She said how sorry she was that we had lost Fred and recounted all the many times Fred had carried Isaac in her store. I had had no idea that they had spent so much time within the store. While little Freddie was in school and while I worked, Fred and Isaac were surrounded by a maze books in a room filled with a love of knowledge. My eyes filled with tears as read of this vision of a father and son.

While painting the mural 73 cents in July, many staff members came to speak to me about the painting. Even the co-owner Barbara came out a few times to talk about medicine and paint.



When Howard Dean had a book signing at Politics and Prose, he came out to see the mural with one of my friends. When I tell people how to get to the mural 73 cents, I often say you can’t miss it. It is right by Politics and Prose.

So you can image how happy I was to be invited to show my canvas work at Politics and Prose later this month. The canvas work I have done will be displayed in the coffee shop in the basement of P&P from November 19, 2010- January 5, 2011. The opening reception will be Monday, November 22 from 5:00-7:00 pm. I will be showing many pieces about our personal struggle for information during Fred’s cancer journey. I will also show some pieces that comment on social media, open government and Meaningful Use. I hope you can make it.

I am glad I will see Fred’s face again inside of P&P, or as my little Isaac calls the store: Daddy’s Library.

The Palliative Effect of Hair Styling

DSC_0238
Originally uploaded by health2con

I recently attended the Kaiser Permanente Executive Leadership Conference in Washington, DC. KP leaders gathered from all over the US for this event. At the opening of the meeting, KP showed a compilation of several videos to present my art advocacy mission supporting patient access to the medical record and the painting 73 Cents. It was a very powerful video, and after watching it, several members of the audience came up to talk to me about … my hair color.


I am one those people blessed to have been every hair color. I was born with a thick head of black hair. In a month or so, it fell out and came in blond. As I grew, my hair turned red and was that color for many years. By the age of 8, my hair was light brown. In my teens, my hair turned to a dark brown. With having such an amazing array of colors in my youth, I found I didn’t feel constrained to any one color, and in my twenties, I decided to lighten my hair back to the red of my childhood. When Fred grew ill, I was still the light red I had been for many years. After Fred died and I began my painting advocacy, I continued to keep my hair a light red. While working on 73 Cents, I spent days painting in the bright sun, which bleached my hair even lighter.

As the months of painting and grief progressed, I looked at my roots coming in completely gray. I now could truly say I had had every color of hair. But I am only 38 and do not plan to go gently in that gray night. So I went to a local salon for a color consultation. The nice stylists there told me I should go darker as it would look nicer with my complexion.

I submitted to their excellent advice. While I sat in the chair, I spoke to the stylist about hair and cancer. I told her about my husband’s 10-week hospitalization. After about six weeks, his hair had grown so long. We inquired about barber services. The hospital informed us there was a nice lady who performed haircuts for patients. She was very nice, but she did not have a lot of skill with cutting the hair of a bedridden patient. The entire experience turned into a farce that Fred, his folks, and I shared with friends for weeks to come.

After I shared my story with my hairdresser, she told me a tale of her own. She told me how she was the last one to shampoo and style her mom’s hair while her mother was in home hospice. It was a beautiful tale. It made me want to cry. I could almost see her hands gently washing her mother's hair. I could hear the happiness and sorrow she felt in her attempt to help her mother. Yes, she made her mother feel pretty; but this offered more than that. She touched her mother. She caressed her at a point in her life when she so need to be touched. She anointed her hair with oil…

So I am not bothered that the most asked question after viewing a video of 73 Cents was about my hair. I know often when we talk of hair, we might also be talking about beauty and death. Perhaps I have gone darker … because I have gone darker. Like Dark Willow or Dark Phoenix, I am not the same as when I started.


I brought two portfolios with me to the KP conference. One is light and cheery; it is my "before" album. For so many people ask if I was always an artist; I have always been an artist. I used to paint book characters and children's bedroom murals. The before portfolio shows the work I have done with children for the past eight years. The "after" portfolio is for the Medical Advocacy Mural Project. It is filled with images that often disturb but still retain hope. I like to create images that make you think, even if they tend to cause upset. This portfolio is darker, but there are still windows of light. This portfolio contains medical murals, jackets with patient images, and canvases I paint on-site at conferences.

Recently at Health 2.0 in San Francisco, I met a very beautiful woman named Diem Brown, and I painted her sadness. Diem was only 23 when she was diagnosed with ovarian cancer. She found herself adrift with no one to ask for help. Wedding and baby shower invitations were arriving in the mail while Diem was struggling to pay for chemotherapy wigs and to arrange drivers to her various medical appointments. She thought, “Why is this so hard? Why isn’t there a registry for cancer sufferers like those that exist for brides?” Due to Diem’s valiant effort such registry exists now, and it is called MedGift. Her story touched me so that I painted it into the Health 2.0 painting Bridging the Great Divide.

In this part of that painting, the bride is combined with the cancer patient. The best point in her life is combined with the worst. The sorrow is palpable. The cancer bride's hair is falling out, and strands are held in her hand. She is reaching for the apple of knowledge. In that apple is placed an eye. Knowledge without vision helps no one.


Weeks after I painted this, I was sent the wedding photos of Katie Kirkpatrick. If you have never seen these photos, I recommend you take a moment to view them. Katie was suffering from end stage cancer when she married her high school sweetheart. Under her lovely gown her limbs were swelling as her organs began to shut down. Just glancing at the photos made me cry, as I saw a body so similar to Fred’s before his death. She was dying and she was beautiful and … her hair was so pretty. She died five days after her wedding.


Thank you, Diem, for sharing your vision with us all. I am sure there are many people who will thank you for creating MedGift to help them when things seem their worst. Thank you, Katie, for sharing photos of your happiest day while so sick; we shall never forget you.

And thanks to the folks at the Kaiser Permantente who were brave enough to invite a cancer widow to an executive conference to remind us ...we are all patients in the end.

Watching THE DAILY SHOW while Dying

Jeff and Fred in Hospice
Originally uploaded by Regina Holliday

When I young, I was a very good student at Sapulpa High School, but I was twice sent to the principal’s office. I was sent once for health and once for comedy.

I was a journalist for the high school newspaper and was looking for a story. The student body had recently completed a survey wellness check. I found out the school office had a copy of the results. I wrote an article reporting the findings. The statistics I mentioned included drug use, alcohol use and sexual promiscuity within the school. After turning in my story, I received a summons from the principal. The school paper would not print my story. I wondered aloud if I had made a mistake in my fact checking. The answer was no--they just did not want me to expose the results of the wellness check.

Later in the year, I wrote and directed the senior assembly, including the skits. I was called to the office yet again, as some of the skits contained a comedic analysis of the school that was a bit too scathing. I was ordered to revise the skits and make them “nice.” I to some extent complied, although a little of the original biting humor remained. I was tired of being called to the principal’s office. I thought it was rather ironic that it was called the principal's office, as I found my principles tended to get trampled there.

I had found that using humor and art I could often make a point that would never be allowed in the more mainstream press. I guess that is one of the reasons I spent over 10 years watching The Daily Show on Comedy Central. I liked the show, and Fred loved it.

If all clinical services were equal, would you decide which hospital to stay in based on whether or not they had Comedy Central? Fred would have. He stayed at five hospitals during his eleven weeks of care, and only a few offered this on their basic cable menu. Fred loved the program The Daily Show with Jon Stewart and its spin-off The Colbert Report.

Fred and I started watching this as our nightly news in 1996. Back then it was hosted by the very handsome and blond Craig Kilborn. I thought his very visage was in itself a joke about whom we choose as an anchorperson in this country. He was a very pretty talking head spouting humorous nonsense.

In January of 1999, Jon Stewart took over at the helm. Fred already loved Jon Stewart’s comedy work and was very impressed by this new shift in leadership. I was not an instant fan. The show seemed to get a bit more serious and the humor had more of a bite to it. This was now a thinking man’s farce and Fred would often use the Internet to do further research as stories on the show piqued his interest. We watched The Daily Show together for years and in 2005 began watching the spin-off show as one half of “Even Stevphen.” Stephen Colbert created The Colbert Report.

In time, I was won over by the program and began appreciating the biting satire that both shows used to lampoon political parties, world leaders, and the hapless celebrity. But I was most impressed by Jon Stewart’s autism benefit of 2008; as he asked for donations from the audience so few people raised their hands. You could see outrage on his face as he pledged to donate in front of a crowd who had far much more money but less heart. That day I began to love Jon Stewart, because it is all a joke…. until it is not.

In March 2009, Fred was hospitalized. There were many problems with communication at our first hospital, but at least they had Comedy Central available on their cable menu. When we transferred with an out of date and incomplete medical record to a new hospital. Fred was saddened to see that there was no Daily Show to help ease his pain. But at least this hospital had WIFI, so I was able to upgrade our old laptop so Fred could see past shows via the Internet and surf the web. As I have said before, there are many ways of relieving pain.

A few weeks later, Fred was transferred to rehab. At this facility there was no Comedy Central and no WIFI. After spending a few weeks suffering incredible pain in the rehab facility, the decision was made to enter hospice. Fred was crashing. Upon entering hospice, Fred was not eating, drinking, or talking. In 24 hours he rallied under the good care of the hospice team. He was able to talk with friends and family and watch The Daily Show again. A few weeks later Fred came home for hospice care. It was a very hard time. I was trying to balance caring for my husband with caring for the kids, while Fred’s mother helped as best as she could. It was very hard, but each night we would hold hands and watch The Daily Show.

Here we come back to the title of this post. In the early morning of June 17th, around 1:00 am Fred could not sleep. He was having such trouble breathing. I turned on the TV, and holding hands, we watched the late night repeat of The Daily Show and The Colbert Report. I don’t really know what they spoke about. I was listening to each breath Fred took and trying to ease his pain. I don’t know if it was funny. But I know Fred was happy to see a show he loved and hold his wife’s hand as he lay dying. Fred said his last words at around 6:00am, and by late morning he died.

When Fred had less than twelve hours to live, he spent one hour watching Jon Stewart and Stephen Colbert.

So this weekend, I will be attending Jon Stewart’s Rally to Restore Sanity/ Stephen Colbert’s March to Keep Fear Alive. In a way, I am sure Fred will be with me. It is being billed as the Million Moderate March. This is where all the regular people who do not attend marches can be counted. I will be there as the wife and mother and fan of the show. I will also attend as the activist I have become. Because sometimes things seem like a joke until they are not.

In researching this post, I called all of the hospitals that Fred stayed into verify whether or not they currently offered Comedy Central. I first checked every website to see if anything was listed in their patient amenities. Not one site offered a listing of Cable viewing channels. Each hospital seemed taken aback by my question, one hospital employee even laughed at me. No one knew the answer. In one hospital they transferred me to maintenance, after a pause of a few seconds the Supervisor of Housekeeping said, “Yes, we do have Comedy Central.”

I am glad. I am sure there is another Fred out there who laughing with The Daily Show as the morphine pump provides its gentle comfort. I wonder though, which pain relief is impacting the patient more?

Patients bringing it all to the table...

Have you ever seen me paint in public? I am usually covered in drops and splotches of paint. My hair is a wild, wind-blown mess. My rolling shopping cart is parked beside me filled with brushes and the accoutrements of my craft. When carrying my supplies to the job site, I seem weighed down with the weight of the world, and strangers on the street often assume I am homeless. My canvas is usually a public wall on a city street. I paint beside grit and litter and a faint aroma of urine. What I paint is not always pretty, and neither are my surroundings. I take in this ambiance and a vision from my soul, and I smear them on a wall for all to see.

People stop. People stare. They ask me questions. Like a single rose growing in an abandoned city lot, I do not belong. When I painted 73 Cents, hundreds of people stopped by and asked questions. I would step off my ladder and explain the work. I would explain the importance of data access and patient rights. Those who questioned often apologized for their intrusion. I would tell them no, do not apologize. This is part of public art. This is part of discernment. Your questions inform the art and make it better. The best questions often came from the children. They would ask anything. There was no topic too personal or gross for a child to ask. The parents would often try to hush their inquisitive offspring, but I would just answer. I love the questions of childhood. Ah, to view the world as little children…

I have been thinking quite a bit about the child’s eye view of medicine and information technology in recent days. I have been especially focusing on the view of the child with special needs and autism.

A few months ago, Kevin Kruse invited me to speak at his conference e-Patients Connections. I knew of Kevin through his Twitter presence but also through his sister, whom I met through Twitter and Facebook. Kevin’s sister, Diana Kruse Sebzda, is an amazing thinker and writer on grief. We have talked on the phone about grief and social media, and she is a great friend. So when Kevin contacted me about speaking, I was already primed to say yes. But Kevin took it a step further and asked me to paint on site as well. He then proposed that we auction off the work to raise money for a charity of my choice. I knew at that moment what charity I would support and what would be the body of my speech. I would support the Ivymount School Model Asberger Program as my husband did, and I would speak of our son Freddie.

Do you know the wishes of your loved ones? Have you ever taken that advance directive conversation a step further and found out the in lieu of flowers of your partner/parent/child? I vividly remember sitting at my husband’s side and speaking about pallbearers and which memorial charity would Fred choose. He chose Ivymount. He picked the school that helped our son and held his broken heart within their open hands. He picked the school that counseled and guided a child through the worst moments in his life and provided such solace in a time of great anguish. They did this for us, and they do it everyday. Everyday they help children who have been so hurt in this world. They take children who arrive in pressure blankets and sound canceling headphones and guide them to a place of peace where they can learn and flourish. They take children who come without friends who have been taunted and ridiculed and help restore their self-esteem. The teachers and staff of Ivymount remember what it feels like to be a child. They remember the battleground of the school yard. They know the importance of being allowed to join the play.

So I said yes. I would speak, and I would paint. I would paint a playground. And I would speak of Freddie.

This is a closed data loop.

In health information technology circles we often speak of closed data loops. The patient’s medical record may be easily viewed by the doctor or institution, but not by the patient. I often think of hoops in relation to this discourse. I think of circuits, rings, circles, loops, and Galilee. I even wrote a poem about it called “Wheals on the Bus.” In this painting I am trying to convey the awful isolating power of the closed data loop. The doctor/child is very self-satisfied. She sways within her hula-hoop listening to her headphones. Her eyes are closed, and she is smiling. The patient/child looks on as if a sorrowing icon. His clothing is half patient gown and half Roman column. He is fixed in place with no avenue for communication. The sky above is covered by a glaucoma-filled eye. The all-seeing eye is blinded, and the loop remains closed.

This is an example of point to point communication.

So in this piece we have the concerned patient/child looking into the distance. She holds her sad small PHR (personal health record) in her hand. It looks like a toy silo with a cute little toy tractor. It is a toy; and good for pretending, but it does not communicate within the larger HIE (Health Information Exchange.) To the patient/child’s left two doctor/children are engaged in a rousing moment of double dutch jump roping. Their information surges back and forth within a double helix made of pills and pixels. In the center jumps the joyous hospital administrator. She jumps happily within the spinning data loops as other executives wait their turn.

And there my vision stopped and the conference itself began to affect the work. For as I painted, Sona Mehring, founder of Caring Bridge, began to speak. She gave a very informative speech about the power of Caring Bridge to help families and caregivers during a time of crises. She went on to explain the importance of utilizing the service as no one posts this kind of information on his or her Facebook status line. It was instantly incredulous. I was a no one, I suppose. I did not use Caring Bridge during Fred’s struggle with cancer. This was a purposeful choice. I did not want to separate our little family tragedy from the news feed or from the friend feed. I wanted all of my friends with me on this journey. So every night I posted a status line that told you about our medical reality. If you had looked at my news feed on June 17, 2009, it would have told of summer camps and Farmville. It would have had obscure movie references and talk of weekend barbeques. And you would have also seen:

“Fred passed away this morning. It was really peaceful. Joan held his one hand with Freddie. I held the other hand with Isaac. It was as good as it could be. As Freddie says, Daddy is no longer in pain. We will miss him. We will see him in Heaven.”

While I painted, I felt the power of the tragic stories told on Caring Bridge combined with the endless sharing of Facebook. I saw what could happen when you do not quiet sickness and death, but instead share the message far and wide. So in this painting Caring Bridge marries Facebook. They are zooming by in shiny, red car. Behind them trails a just married sign upheld by the Twitter bird. Also trailing behind are tin-can phones. Those phones connect you to social media. The administrators and executives waiting in line to play EMR double-dutch are communicating via these phones. They may not yet have grasped the importance of implementing a fully functioning and patient participatory EMR (Electronic Medical Record), but if social media is doing its job, with every post, tweet, or share, we are showing them there is a better way. And I wonder if you noticed the bridge in the painting is a modified image of the Key Bridge, because this is truly the key to making health care work for us all. We must have open communication at every step of the way.

This is the future of HIE...

The final painting has an unfinished look about it. This is a scene where doctors, patients, administrators and members of pharma all are holding up the play parachute. They are joyous. They are bouncing data balls into the air. Those data balls spell HIE. This is what a fully functioning health information exchange should look like. We should all be linked together in a circle: included, not excluded. The painting is unfinished because we are not at that point yet. These figures are still ephemeral, but they are holding up the parachute. Playing with a parachute is fun. It billows so nicely, and the silk is so smooth, but we should never forget the reason we have parachutes. Parachutes save lives, but only if you can pull the cord. A parachute that is packed away and inaccessible will not help as you fall.

This final painting in the series I began on the first day. There is an elephant in the sky. I painted this as Kevin spoke of the elephant in the room when we speak of medicine and compliance. That long-suffering elephant has been a beast of burden, hauling its stacks of medical records from doctor to doctor and from place to place. The elephant remembers how it has been treated and seems so gentle and quiet until it trumpets warning.

Well, if you haven't figured it out yet. I am trumpeting! I have hauled brushes and paints. I have carried reams of records. I am an e-patient. I am a mother, a poet, and an artist, and I am ringing the claxon. We will no longer be quiet. We will question like the mind of a child: always searching, always learning and bringing something new to the equation with every point we make.

I am so glad I was invited to e-Patients Connections. I am so happy that Kevin was brave enough to allow me to bring forth the view of the patient. I am glad I could paint just as well in a fancy dress within a large ballroom as I could on a city street. I proudly spoke before those assembled about my wonderful son and informed them about the amazing way he sees our world. I am thankful for Red Nucleus, the company who purchased the paintings. That money will help children lead a better life. I am also filled with gratitude for the amazing help I received from Pixels and Pills. Not only did they post an interview about my work--they also took the pictures of the paintings that were sold and gave them to me on a USB bracelet so I could write this blog. They were gracious and kind and incredibly helpful throughout the entire conference. I am also thankful for the amazing group who listened that day as I talked of despair and sadness, but also of love and joy. The room was filled with amazing advocates for participatory medicine. Some of the greatest voices working within the e-Patient movement were there such as Dr. Ted Eytan, Dr. Danny Sands, E-Patient Dave, Donna Cryer, Phil Baumann, Jane Sarasohn-Kahn, Liz Scherer, and so many more...

At the close of my speech I shared my poem “The Wheals on the Bus.” One line is “ARRA! Arise!” As I finished speaking, the audience did indeed arise. An amazing energy filled the room, and I knew the elephant had come into its own. We were all standing up ready to grasp the parachute and send the ripples far and wide. Now we must go forth in the world as empowered e-patients and change everything!

Check out this SlideShare Presentation:

E-Patient Connections 2010

View more presentations from Regina Holliday .

To Boldly Go Where We Do Not Belong

Painting at Holy Cross
Originally uploaded by Regina Holliday

I paint in public settings. Sometimes, I set up my easel on a busy sidewalk in front of a hospital and begin to analyze patient care using cadmium red. Or I create a beautiful and tragic painting on the back of a business jacket then ask my dear friends to wear these jackets in a room filled with traditional “suits.” I ask them to go where they do not belong.

I tend to embrace outsider art. I tend to appreciate the work of those without formal training who paint because they must. There is a spirit and a drive within their work that is not easily surpassed by technical mastery of the form. I tend to love to see art in unusual places and artists where they do not belong.

This past March, I recited poetry at Bus Boys and Poets during a celebration of healthcare reform. The room was filled with activists, musicians, and poets. There was quite a stir when an entourage of well-dressed figures entered the room and sat on the front row. I recited my poem “Wheals on the Bus". I spoke of riots and rights and data access. I spoke of Martin Luther and Martin Luther King Jr. I spoke of Rosa Parks in relation to healthcare reform. It was a powerful poem. As I stepped off the stage I stood in front of the reason for the entourage. Rep. John Conyers, Jr. (D-MI) stood up clapping and held my hand and thanked me for the poem. A congressman stood within a sea of artists, and we welcomed him.

This week I saw congressman Conyers again. He was asking the comedian Stephen Colbert to excuse himself from a Capitol hearing and submit his testimony into the record. This was too serious a proceeding for a comedian to take part in. He would only distract from the real purpose of the day or perhaps he was only there to promote his show or his march. He did not belong.

I suppose in 1981 there were people who thought Jack Klugman did not belong on Capitol Hill, either. Jack was the lead actor on a very popular show called Quincy, M.E. He was only an actor portraying a doctor, but he had come to speak about orphan drugs. The room was packed with reporters and cameras as Klugman spoke, and his appearance that day is part of the reason the Orphan Drug Act was passed. The other part was the patients. The room was filled with children and adults all suffering from the effects of their rare diseases.

I am so glad an actor and a large group of patients came together in common cause to help those who suffered so. I am sure that day seemed as much a three-ring circus as the recent Colbert appearance.

I will be painting at a conference soon. I will have my easel near the stage and paint and live tweet, and perhaps, I too will seem to be a circus act.

On Tuesday the 28th and Wednesday the 29th of September I will be in Philadelphia. I will be attending the E-Patients Connections 2010 Conference. I will be speaking at the conference about patients’ rights, special education, and participatory medicine. I will be one in many. There are many amazing people working toward positive medical outcomes attending this conference. Looking through the speakers list I see CEO’s, doctors, HIT designers, Pharma reps, and individuals involved in government. I also was pleased to see a poet and an actor. Perhaps things are becoming more inclusive. Perhaps there are fewer off-limit venues for patients and artists.

On Wednesday, I will speak in the morning. At the end of my speech, we will auction off the work I painted on site. It will be a three-panel piece explaining the current role of patients within HIT and the vision of what that relationship could become. I will use the metaphor of a child on the playground to visualize this complex subject. It should be amazing. We will live tweet the event, and people can bid online with the hashtag #ePatCon. All proceeds will go to Ivymount School. This is a non-public school that focuses on helping children with autism.

Whether an artist paints at a conference, or an actor speaks on Capitol Hill, it is important to being willing to step outside the comfort zone. This is a good thing for people and patients to understand. Do not let anyone tell you that you do not belong. When you present the testimony of your health history don’t excuse yourself from taking part in the ongoing discussion.

Painting with my Zombie Finger and Thoughts of the Living Dead

Painting with my Zombie Finger
Originally uploaded by Regina Holliday

When I was painting in preparation for the gallery show in July, I was in pain. I had smashed my finger in a ladder, and it was swollen with the under-nail blackened with blood. As I painted, I thought of how much my finger resembled a zombie’s finger. Gradually painting, with each stroke of the brush a kind of agony, I remembered zombies used to be slow.

My husband Fred and I often talked about this phenomenon. We had grown up with films like Romero’s Night of the Living Dead. Zombies would stumble and walk slowly, groaning as they came. Even an out-of-shape store clerk like Shaun, from Shaun of the Dead, could outrun a zombie. The terror aspect of zombies resided in their unstoppable nature. Zombies did not sleep, they did not stop, and they were everywhere. These are the type of zombies depicted in the 2006 book World War Z by Max Brooks. This book was a follow-up to the very popular Zombie Survival Guide of 2003.

The Zombie Survival Guide itself addressed a pop-culture meme of its time. In 1999 The Worst-Case Scenario Survival Handbook by Joshua Piven and David Borgenicht was published. In the series of books that followed the authors explained how to save one’s self in extreme situations such as crocodile-infested waters or quicksand. In bars and at parties throughout America we took it a step further and asked all of our friends what their zombie survival plan was. In my age demographic, and I am 38 mind you, I have never met a person who did not have a zombie survival plan when asked to provide one.

Whilst this zeitgeist hobbled along, director Danny Boyle and screenwriter Alex Garland were creating 28 Days Later, released in 2002. In 28 Days Later, zombies ran. Purists will say the zombies in 28 Days Later are only humans infected with a virus, but it opened the floodgates. From the Dawn of the Dead remake of 2004 to Zombieland of 2009, zombies now would sprint toward their victims, tearing them to shreds in moments.

We are rapidly approaching the ten-year anniversary of fast zombies, and I think this change in zombie behavior in media is a reflection of the culture of our times. This is only the most recent example of our continuing denial of the image of death within our culture. We can deal with a frantic moving creature trying desperately to live, but many cannot accept the vision of the slow decent towards death.

When I visited Fred’s mother and father for the first time in the spring of 1993, I loved their charming home and was surprised to see a vestige of an older time within their walls. The Holliday house had a formal parlor. The parlor was furnished with imitation Chippendale pieces and matching lamps in a Victorian style. The space was usually dark and serene, a place apart from the busyness of the kitchen and other rooms. Once upon a time in America, everyone who had a decent-sized home would have had a formal parlor. This space had the best furnishings and art, and it was the room in which the recently deceased would be laid out for presentation before funeral. After the Civil War, families began giving over burying responsibilities to an outside business called a funeral parlor. With this change in the way Americans dealt with the transaction of death, formal parlors were replaced with living rooms, and Americans began to distance themselves from the realities of death.

Another vestige of this time that is rarely seen today is postmortem photography. I vividly remember going through a tin of old photographs as a child. I remember holding up a picture of a “sleeping” baby and asking my mother who the child was. Even at six years of age, I can remember feeling something was not quite right within the image. My mother paused and then told me it was the dead sibling of my father. The child had not lived long enough for a picture of it while living so they had a portrait taken after the child had died. I remember holding onto that picture for what seemed like an eternity. Although I placed it back in the tin 32 years ago, I can still see that baby in my mind.

Years later when Fred met my family, he held my hand as he patiently looked through years of family scrapbooks and photograph albums. After viewing a few albums, he was surprised and a little disgusted to see we took pictures of the dead. In our albums he saw my aunts and uncles and distant cousins all arrayed with their funeral finery. In 2001, one year before the fast zombie would make its debut in the world of film, I stood beside my husband as I took a picture of my dead father in his casket. Fred whispered in my ear, “Do not take a picture of me in my casket after I die.”  I respected Fred's wishes and when my Fred died, I did not take his picture. I did not have to. That image is seared within my mind.  But I also respect the wishes of all those families who take pictures of the love ones who have died.  Every now and then I see them in my Facebook and mourn with these families.

I recently read Atul Gawande’s piece in The New Yorker, Letting Go: What should medicine do when it can’t save your life. I was struck once again with the extreme discomfort most doctors have for discussions about end of life care with their patients. In our cancer journey, Fred and I often had to deal with the inability of Fred’s doctors to talk about the reality of palliative care and hospice as an option. In the emotional roller-coaster of potential treatment and curative care, we were left without a very good understanding of the benefits of a palliative course. After Fred was no longer eating or drinking and was in extreme pain, this direction was suggested, and Fred signed the appropriate paperwork. When we transported Fred to the hospice facility, both the EMT transport team and myself thought he might only have days left to live.

Due to the excellent care of the hospice team, Fred rallied and he lived for almost another month. The curative care without a palliative component that Fred had been receiving at the rehab facility was killing him faster. I was therefore not surprised when I saw an Aug 19, 2010, article from The New England Journal of Medicine stating, “Among patients with metastatic non–small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival.”

So why do people resist the concept of hospice and palliative care when it has shown such ability provide a better quality of life, and in so doing, perhaps even extend life? Why do all of those friends of mine have a well thought-out zombie survival plan but have never considered filling out an advance directive? Why do we resist the reality of death as a part of life?

I think we were cheated out of the few accessible images of death within our culture when zombies became fast. Death is rarely fast in the world of cancer. It can take years or weeks or days to die. I have talked to enough spouses and caregivers at this point to know the experience of death is often the same. In Dr. Gawande’s article, Rich, the husband of Sara Monopoli, described her final hours. Rich recalled, “There was this awful groaning.” There is no prettifying death. “Whether it was with inhaling or exhaling, I don’t remember, but it was horrible, horrible, horrible to listen to.”

I know exactly how horrible those groaning breaths sound. I heard Fred make them for hours as he tried to breathe at the end of his life. But I heard them before in a pop culture world that tried to make sense of the senseless.