Hope

This was the third time I circled the perimeter of the College of New Jersey looking for the visitor parking lot.  Most of the parking lots were an expanse of ice and snow on February 19^th.  I gave up and asked the campus police where was a safe place I could park.  I was very happy that I was able to drive to the venue.  Back in July when I had been invited to present, I did not have a driver’s license.  I would spend the entire summer in driver’s classes and after trying to pass my Maryland’s driving test three times; I finally succeeded on the 4^th try in September.   

Needless to say, I am not very good at driving.

My family was a little worried that I was going to drive across Pennsylvania and into New Jersey as a relatively new driver.  After I hit my first New Jersey pothole going 55 miles an hour, I was pretty worried too.  I arrived in New Jersey on the evening of the 18^th and stayed with the family of John Phelan as they were willing to play host.  John is a member of The Walking Gallery.He is also the founder and CEO of Zweena.  I really enjoyed talking with him about Health Information Technology while I was visiting.  I am thankful to his family for tolerating our mutual interest in all things data.

On the 19^th I parked my car and rolled my suitcase full of art supplies to the student union.  I set up my easel and began to paint.  Since I knew little about this venue I began a Gallery jacket.  Like many venues I have attended, the custodial staff was the first to approach me and ask questions.  Next the curious students walked up to me and began to speak.  I was so happy the students were asking questions.  All too soon, I needed to put away my easel and walk to class to begin my lecture.

Yifeng Hu, a faculty member of the Department of Communication Studies, invited me to guest lecture and this is how she invited me:

“First, let me briefly introduce myself. I am an assistant professor at The College of New Jersey (in Ewing, NJ, between Trenton and Princeton).  I got to "know" you through two NPR articles and then your blog. I wanted to contact you for two reasons. First, as an individual, I am so with you and your work!

Second, as a professor who teaches an advanced undergraduate course titled "New Media and Health Communication," I can't help but inviting you, or attempting to invite you to give a speech (or a virtual speech via Skype etc) to my class, because some topics we survey in the class are so relevant to what you have done and are doing, e.g., patient doing online health search or bringing online health information to the doctor, EMR. I teach this course once a year in the spring semester; if you are interested in the idea, I will contact you again when we approach the end of this year.

Meanwhile, if you wish, I think our bigger campus community will benefit a lot from your talk. If you wish to give a campus wide talk, we can do so…”

I keep my tone even and did not over-power Yifeng’s classroom as I began to talk.  The students were well prepared to hear me speak.  Yifeng had encouraged all of them to write on my blog and read my posts. They asked wonderful questions and one students was so engaged she became part of my painting the following day.  She became the woman whose gown spirals away within the coil of a question mark

This is the painting “Hope.”

I painted this in the student union.  It began with a maelstrom of clouds. Students came up to me throughout the day and asked about the significance of the painting.  I explained the spiral of energy leading to a question as an image of their college experience.  After awhile I spoke to a young man who was trying to raise funds for an art installation.  I told him about the power of crowdfunding.  He is the man spraying the word “Hope.” The African American woman in the painting was a student who happened by and was happy to see me painting.  All the figures seem endowed with great energy.

On February 20^th I gave a large lecture before various departments.  In this speech I was my usual emotive self and the audience responded accordingly.  I was also a bit loud.  At one point a fellow came from the outside café in the hope of hushing me.  That is rather hard to do as many people have realized over the years.

I wrapped up my speech and thanked everyone especially Yifeng.  She had been such a gracious host.  Do you know she plays the violin?  She is quite accomplished at it.  I hope someday to introduce her the Tom Delbanco, MD who works on the Open Notes project.  As he also plays and appreciates the power of the whole note just as Yifeng appreciates to hope her students have in the future to come.   

The Keeper of the Match

I have read many books focused on patient advocacy and one of my favorites is “For the Love of Scott” by Jo Hamilton. She gave this book to me a year before I painted her jacket story.  I read the book and was amazed by all the subtle foreshadowing of her life to come in the stories of her childhood.  The tone of her book reminds me of the Little House and the Prairie stories by Laura Ingalls Wilder.  Her family story is warm and loving though it depicts a tragedy.

I painted “The Keeper of the Match” for Jo to tell the story of the love she has for her brother.

Jo grew up on a farm and was used to the reality of farm life.  When she was a girl she loved a farm pig named Spot.  She would ride spot and talk to her.  Spot was a very smart pig.  One day she called for Spot and she did not come; Spot was gone.  She asked her father what had happened.  Her father told her Spot had “Gone to market.”  Jo did not question what this meant and just accepted it as part of life on the farm.  Jo also helped her father in the barn by cleaning up 14 piglets newly birthed by a sow.  She was only a little girl but was already becoming a caregiver.  So I painted a piglet in the lower corner of the painting.

Jo’s youngest brother Scott was born in September of 1960.  Although Jo had hoped for a sister, she fell in love quickly with her little brother.  She would rock him endlessly and was so happy when they found a milk substitute for him made from soybeans.  Scott was allergic to milk and the soybean formula saved his life.  So I painted soybeans in the top panels of the painting.

As many children are wont to do Jo and her brothers played with fire as youngsters.  Jo and her older brother Denny were considered responsible enough to light matches and burn trash.  They were still children though, and decided to try to mimic adult smokers by smoking cornhusks.  As Jo tried to inhale the burning cornhusk, a breeze came up and roasted her hair and eyebrows.  Her little brothers watched with horrified awe.  Jo knew she had to be a good influence for her little brothers, as she was the keeper of the matches.

As Scott grew he became an avid baseball player.  Jo was able to attend many of his games when she was an adult and Scott was in high school.  Scott was so good that he went to college on a baseball scholarship and was eyeing the minor leagues. 

In August of 1983, Scott began complaining about back pain.  He went to the doctor.  The doctor was concerned as he found a lump in Scott’s groin.   Scott had testicular cancer.  Scott had surgery and went on the have aggressive chemotherapy.   Due to Scott’s great physical shape prior to illness he was tolerating the chemo series fairly well.  By the third session a CAT scan revealed that his abdominal tumor was gone.

Scott did not want to complete his fourth and final round of chemo.  The family was not sure it was necessary.  The doctors pressured him to continue.  Jo counseled Scott with, “It’s only five more days of chemo.”  But she told him that the choice was his.

Scott began his final round.  This session was excruciatingly painful.  Scott felt like his veins were burning up. Scott was given a Cisplatin overdose. He had been given 3 times the daily dose for five days due to a mixing error.  No one ever checked the labels on the bags.  So I painted the provider with his hands behind his back. 

One of the last rational things Scott would ever say during his very painful death was to his sister Jo.   “Jo you have to tell people what they have done to me, you have to tell them!”  Scott began hemorrhaging throughout his body.  He was given paralyzing medication to keep him still. The family stayed by his side throughout the onerous ordeal.  He struggled on eventually receiving 74 pints of blood.

In late December Scott seemed to be recovering, he was going to be taken off the ventilator. A nurse determined there was a hole in the PEEP tubing, which compromised his oxygen level.  After suffering a massive overdose Scott died from another preventable error.

So this is Scott’s story and it still burns.  This is the story that Jo is still telling three decades later.  She will never stop telling it because Jo is the keeper of the match.