Media Matters: Carolyn's Jacket

This jacket belongs to Carolyn Capern.  Carolyn was one of Fred’s students at American University in the fall of 2008.  I heard about her talent and ability from my husband long before I ever met her.  In the spring of 2009, Carolyn became one of my Facebook friends.   She followed the odyssey of Fred’s often botched and fractured care in real time. She wrote about our story and advocacy in Carolyn's Thoughts: Health and the Hollidays on August 14, 2009.  

She was there the night we dedicated the mural and sang songs from Buffy the Vampire Slayer.   She presented at the Social Justice Camp DC event in January 2011 and spoke about social justice at AU using multiple images from the media.

When I began design Carolyn’s jacket, I was very inspired by the lessons Fred taught us both: Media Matters.  Media can provide the bridging conversation that can create great sense empathy among all participants in the conversation.  Media can give you chance to communicate your ideas to a larger world.  Media access can help alleviate pain even if you are Watching THE DAILY SHOW while Dying.

While I was painting, I thought of a specific conversation I had with the IHI fellows. On March 10, 2011, I was in Green Bay Wisconsin learning about the amazing patient care activities at Bellin Health. I spent the day being shuttled from one care venue to the next.  That evening I had the pleasure of going to dinner with several folks from Bellin and the IHI fellows. I was so happy to speak with them. I met John Kruger, MD, employed by the Native American Medical System in the Southwest.  I also met Malcolm Daniel, IHI Fellow and Patient Safety Advocate from Scotland, and Lesley Anne Smith, the Head of Clinical Governance and Risk Management at NHS Highland, UK. 

And partially due to my presence at the table, we talked about 1970’s family television programs in the US and how they relate to medicine.   You see many years ago, my husband Fred taught me a very valuable lesson in dinner conversation.  You can always lead a conversation in a new direction if you begin talking about television or movies.  Fred did this all the time, as he was very interested in media and how it affected our world.   It was really fun to talk of shared experiences through the episodes of years gone by and how each narrative arch captured the zeitgeist of the times.  He also did this while teaching class, which made some students consider him “prone to go off topic” and cause other students to love him.

That night, I spoke about The Incredible Hulk TV series as it depicted the depths of sorrow and grief upon losing a spouse, as well as depicting concerns about accidental overdosing in radiation.  I bemoaned the quality of current "children's programs."  They seem to expect too little of children.  I started watching The Incredible Hulk at the age of five.  I loved the show.  It conquered topic after harsh topic.  I was only 7 years old when the episode "Metamorphosis" aired. In less than one hour, the show addressed anger issues, classism, drug abuse and passive suicide.  It promoted altruism and the concept of embracing your calling in life, regardless of whether it is as economically advantageous.
 

The topic then moved to Little House on the Prairie, and we spoke of the episode where Caroline has an infected cut that she must clean before it is too late.  I also brought up my own personal experience of being empowered by Mary Ingalls portrayal of a child needing glasses.  So empowered, that I managed to convince my mother of my need for an eye exam.  And I rejoiced in the improved vision with my New Eyes.   I went on to mention the episode where Mary loses her baby due to a fire.  Mary then goes through a period of deep denial and before collapsing into a catatonic type of grief.

We talked about the important role Jack Klugman, star of Quincy, ME, played in television and in Congress.  He and his show, with its depiction of patients who have rare diseases but could not access needed medication in the United States, helped to pass the Orphan Drug Act. 

We touched briefly on Fred’s favorite character: Hawkeye Pierce on M.A.S.H.  That show’s brave decision to dedicate the majority of its final episode “Goodbye, Farewell and Amen.” to Hawkeye’s nervous breakdown and hospitalization for mental treatment, helped promote a greater awareness of the effects mental illness and depression and showcased a potential road to recovery.   This episode aired in 1983 and was the most watched television broadcast in the history of American television until 2010.  I was only 11 years old at the time that it aired, but I vividly remember sometimes a "chicken" is not a chicken.  Sometimes the choices we make in life lead to someone else’s death.

Finally, we discussed the character of Grandma Walton from The Waltons. To me Grandma Walton is the face of a stroke.  I was only six years old when Grandma Walton came back on the show after Ellen Corby, the actress playing the role, suffered her stroke in 1977.   I remember the shock of seeing her face and words twisted, but I also remember how glad I was to see her back.  This was 1978 years before ADA legislation; it was not common to see people with disability or illness on TV.  I was only six, but I was proud of Grandma Walton.  I was proud of what she stood for.  I took her bravery in appearing very personally.  You see my mother had an episode of Bell’s palsy during that past year.  My mother no longer smiled.  Half of her face was slack and she wore bandage over one eye to keep it moist.   But each day she would go out and live her life just like Grandma Walton.

It was a winding conversation that night, but it came down to the power of the media to tell the story of Medicine.  And the televised story of a stroke brought us back to Bellin Health and Betty Bundy and The Power of Naming Names.   Which brings us back to another thing Fred liked to say, “It’s about the story stupid.”  Why does Dennis Quaid have the power to help change the way we identify medicine?  How has Michael J. Fox and his foundation raised so much money in so little time to fund Parkinson’s research?   We fell in love with their characters.  We let the fictional realities they depicted be projected onto the flickering screen within our heart.  So when tragedy struck, we took it personally.  When we watch the shows that define our lives, they teach us lessons.  They give us parables.  They show us when to pull a “Shirley Maclaine” and when it is time for The Last Puppet Show.

In close, thank you, Carolyn, for wearing this jacket.   Fred would be so proud.  Each day you walk the earth and spread his message about the importance of media, you create a living tribute to his memory and inform others about the power of the story.  That is exactly why we walk within The Walking Gallery. 

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.