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?

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.