Something Sacred: Ted Smith's Jacket

There is nothing more tragic than a missing puzzle piece.  At least, that is something my mother would think.  She loves jigsaw puzzles and every Christmas I mail her a new one.  Some of the ones she loves the best I have framed for her, and they are displayed upon the wall as art.  Even though my mother suffers from arthritis, I have seen her crawl upon the floor to recover that fallen puzzle piece.  I have heard her sad mutter and her anguished face upon discovering that within a 500-piece puzzle one piece is missing.  “It is ruined,” she says, “If even one piece is missing, it is ruined.”  

Recently while talking to Ted Smith about The Walking Gallery and his jacket, I began thinking about mothers and jigsaw puzzles.  I met Ted Smith officially on Facebook on September 6th, 2010. Ted is Sr. Advisor, Innovations and Technology Transfer, ONC at U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES.  In the fall, we were both asked to participate as judges of the Health 2.0 Developer Challenge using Community Health Data.  He reached out to me and asked to be my “friend.”  We spoke in person at the IFHC Patient-Centric Roundtable, on March 4, 2011.  He seemed kind and rather quiet in room filled with the large voices of the likes of e-Patient Dave, Ted Eytan and Alex Drane.  He stayed in touch with me in the months hence and I asked him to join The Walking Gallery.

The Walking Gallery is two weeks away, and so far I have danced around the edges of the sadness and the deep despair that informs so many of these jackets.  Ted’s jacket begins to plumb those depths of emotion.  This is Ted’s jacket: “Something Sacred.”

Ted’s Mother, Grandma Smith, sits in the center of the frame. Her face stares out at the viewer with the frank appraisal of those who are about to die.  “Why?” She asks us as multiple pills drop from her hands.  Her hospital gown covers her nakedness, whilst large chunks of her body have been removed.  The holes that are left behind form the shape of a jigsaw puzzle pieces. 

On either side of the frame two medical professional view the X-Rays of Grandma Smith.  Our left side doctor holds her x-ray to the light and decides with that piece alone she will prescribe a certain medicine.

On the right side of the painting another Doctor views another puzzle piece upon a computer screen.  She, too in turn, will prescribe another drug to solve the problems of this symptom.  Neither Doctor will put the pieces together to treat the whole wonderful person that is Grandma Smith.  She would have no reconciled view of her past or current treatments and the cycle of side effects and symptoms would be larger than any doctor appeared capable of reconciling.

The drugs become a towering landscape that dwarfs the patient in its midst.  Label upon label is affixed upon jar upon jar of medicine.  All the while, the patient wonders why.  Alone and afraid, she sits besieged as the pills encroach.  So she suffers unnecessarily and expensively from the side effects of the treatment of a narrow range of disorders, all the while a rare and aggressive cancer was attacking her from within. 

But there is hope within the painting, the beams of the sun pour down upon the terrifying image.  Those beams are made of the 1’s 0’s of binary code.  This is the data cloud that can save us.  This is all that is simple and transparent.  This is Ted’s hope for us.  Ted hopes for a time when someone else’s mother’s full treatment can be viewed in one place.  He envisions a future where a computer can deal with the simple stuff, i.e. drug interactions, and Doctors dealing with the harder stuff.     

He sees a future where a person’s entire medical history is only a mouse click away; a future where the lack of one data set is considered just as tragic as my mother’s lost puzzle piece.

Little Miss A-Type Personality: Regina’s Jacket

I recently gave my sister a copy of my current business card. It says all the necessary things: my name, my phone, my email, my blog, facebook and twitter handles. It also has two paintings on the face of the card: “73 Cents” and “Apples to Apples.” I also have a painting on the back of the card. That painting is “Office Hours.” Esther asked, “What is the story behind that painting? A lot is going in the picture, and I know every element inside of your pictures has a meaning. Did you ever blog it?”

No, I havn't blogged “Office Hours.” This is a painting depicting one of the worst moments of my life.

When Fred was in the hospital, I spent weeks asking for information and getting very few answers. During the second week of hospitalization we desparately needed Fred’s disability paperwork filled out. Fred’s oncologist rarely came to the room, so the social worker said she could fill most of it out for the doctor. The doctor became very angry that we had gone around him to get the paperwork completed. He was also angry that I was asking questions. He went to my husband and saying, “I understand Little Miss A-Type Personality has been asking questions about this case.” Fred said yes, that I had been asking questions. The Doctor said, “Well, if she wants answers about this case, she should come to my office hours.” When I arrived to Fred’s room, he was very angry with me and worried that his care may become worse, since I had asked so many questions. I felt very torn, between wanting to please my husband and knowing that something was going very wrong in the way he was being cared for.

The next day I went to the Doctor’s office hours.

He never closed the door in the fifteen minutes I had to speak with him. He never stopped taking phone calls, nor did he stop talking to the nurse who had her keys in hand as she complained about the parking problems in the employee lot. He discussed with another nurse the transport and rooming arrangements of another patient by name. All the while I sat before him and waited in my chair seated next to the trashcan. When he began to rattle off the points of metastasis at lightning speed, I said, “Please slow down because I am writing what you are saying down, so I can research later on the internet.”

He responded, “I don’t like people who research on the internet.”

I said, “I am sorry, but I do not have a background in medicine, so I have to research to understand what you are saying.”

He said, “That is right, I am the one with the medical degree.”

I looked up at him as hid behind a computer screen. I looked at his medical degrees and awards on his right side and his family portrait on the wall to his left. I looked at that family portrait on the wall and I saw our little family. I saw him shatter our family like glass. We weren’t an important part of his day. A moment that changed my life forever was only one more appointment in his over-scheduled work-week.

So that is the story of “Office Hours.” And I think it is important that you know that story before you see my jacket for The Walking Gallery. It is important that you know about it, even before you consider the concept of The Walking Gallery.

For the last two weeks people have been asking me why paint business jackets and women’s blazers. Why not paint on a jean jacket or a tee-shirt? Why ruin a perfectly good suit? We paint on dress jackets because it is disruptive and somewhat wrong. Anyone who lived through the eighties can remember painting on jean jackets and tees, and recognize the societal approval of painting on such low class items. I still remember begging my Mom for a jean jacket for Christmas, and I seeing my mother’s consternation that I would want to pay good money for a garment that looked like something a farm hand would wear.

When I first began my advocacy work, I would attend events in my best Church dresses. It didn’t take long for me to feel completely out-of-place. I was not wearing the right uniform. I soon invested in the appropriate women’s blazers and felt an appreciable difference in how I was treated at events. I had adopted the conference uniform and now I could play with the form. To Paint on jackets that are worn at medical conferences, is to bring street-art into the c-suite; this introduces the gritty urban danger, the unpredictable element into the room. This is keeping it real.

And the business suit art that forms the body of The Walking Gallery is far more subversive than just gaining entry into the ivory tower and boardroom. This is taking a care paradigm and re-interpreting it. I know so many patients who suffered in silence while the world turned its back on their suffering. Now, when you turn your back on a patient you are actually communicating at a far deeper level, for on your back you portray the patient voice.

So, a doctor who wished to keep me small named me “Little Miss A-Type Personality.” I will embrace the moniker, and I will walk the halls of medicine wearing a scarlet letter. I will wear an "A" for the artist I am. Any artist with a capital "A" suffers greatly for her art.  I will paint my pictures with pigments mixed with tears.

This painting harnesses darkness, as I painted this jacket utilizing the power of negative space.  As defined by Wikipedia."Negative space can be used to depict a subject in a chosen medium by showing everything around the subject but not the subject itself. Usage of negative space will produce a silhouette of the subject."  I think this method of painting is very applicable to patients, as we are often left out of the big picture, and our presence is often defined by the space that is left empty and HIPAA compliant.   


This is why I paint. This is why I speak, so others shall not suffer as we did. I hope is so doing to take a negative space and turn it into a positive one.  For every action there is an equal and opposite reaction.  I hope the work we are doing this day can respond to all those other days when we suffered so.

Tonight, I showed my twelve-year-old son Freddie my jacket painting. He really liked it. He liked the palette that looked like a skull and he liked the cowboy paisleys. But he did not like the cartoon faces of pain that I held like a paper garland in the piece. I explained that is what the pain-chart looks like when you are in the hospital. He stared at me aghast. “Pain isn’t joke. Dying isn’t silly, like those faces.”

Oh, Freddie, I agree.

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?