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Wednesday, October 27, 2010
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?
Monday, October 4, 2010
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: