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Monday, April 14, 2014

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 19th.  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 4th 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 18th 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 19th 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 20th 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 cafĂ© 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.   


Wednesday, April 2, 2014

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.

Saturday, March 8, 2014

Regrounding


When I painted Lori Marx-Rubiner’s jacket the lights were flickering in the high winter winds.  My eldest son complained about the constant loss of WIFI.  I called a Comcast technician and continued to paint.  When the technician arrived he showed me wires that were melted due to power surges and encouraged me to call the electric company.  I called them and they sent someone out.  The technician inspected the high wires and explained the problem. We had lost our neutral ground and our house needed regrounding.

 So I was inspired by a life that I read about and I life I lived as I painted “Regrounding.”


Lori has been through a lot shocks in her life.  She is a 12-year breast cancer survivor. She was diagnosed at 35 after having a baseline mammography.  She was married with a three old son when she was dealt this blow.  She rapidly went from a “why me” mentality to the stance of an empowered patient.  She fought cancer, but she did not fight alone. 

Her entire community stood beside her. That is a wonderful thing.  A family going through cancer treatment so desperately needs the support of a wider community. In the years, hence Lori has become part of an even larger community of advocates.  She speaks out about cancer and breast cancer and attends medical conferences to share the patient view.

In 2009, her doctor told Lori that her tumor markers were up.  She was scanned and there were signs of healed bone metastases.   She is taking medication to heal the bones and injections to keep hormone levels low. 

She is regrounding.  Cancer may be her constant companion, but so is her local community.  She is taking the energy that pulses through her and channeling it through her Judaic faith and her wider advocacy.  She is one with the solid ground that supports so many.  That same ground will someday embrace her.

In a life we are blessed with so much energy.  That energy can be used in destructive ways or for healing.  Lori has chosen to be a grounding agent, and thereby helps so many.    

Thursday, February 13, 2014

The Web We Weave


On January 29th, 2014 I was honored to present at the 1st Health Informatics Tri-State Summit on the campus of the University of Southern Indiana in Evansville.  The room was filled with energetic folks with interesting questions.  I was honored to present and paint.  This was of those venues where I painted in the front of the room and occasionally threw out questions to the speakers whilst painting.

At the event, I painted this piece entitled: “The Web We Weave.”


Gabriela Wilson began the day by greeting us warmly.  Peggy Graul explained the schedule of the day.  She even mentioned the twitter hashtag: #hitsusi and that made me very happy.  You can see it archived on Symplur. While they spoke I painted a swirling winter sky. As they explained the foundation upon which they plan to build future conferences, I painted the new earth ready for seeds.  Then I put down my brush and began to speak.

I delivered a speech entitled the “Power of Stickers” at 9:15.  It was very well received.  After my presentation some audience members spoke to me during the break.  One was a lovely woman mentioned she was going to DC soon with her life partner to be married.  I painted her into the painting at the upper left holding a small rainbow flag.



At 9:30 I was so excited to see Jeff Donnell, President of No More Clipboard speak.  This is my third time to see him speak and he is always great.  He began by blasting bad stock photography of patients used by so many healthcare institutions.  He explained what was happening in the HIE (Health Information Exchange) in Indiana.  They are doing some great work. They are also working on a pilot that got me so excited I copied its title right from the state of Indiana HIE site:Implantable Cardiac Device Consumer Data Integration -- Use HIE to engage the patient in care management for chronic conditions and diseases by allowing health data to flow from an implantable cardiac device to both an EMR/patient portal and the patient’s PHR.”

While Jeff was discussing these topics I began to paint and HIE web into the painting.  This wasn’t the beautiful web of the orb spider. This was a cobweb.  I have attended HIE meetings all over the country.  Some systems are successful some are not, but most were built in fits and starts without a concept of over all design.  But like the common cobweb these structures still do the job of catching things. 

Then Jeff spoke of his work trying to incorporate patient data access to the HIE as part of an ONC Challenge Grant.  He said he now knows why they are called Challenge Grants because there was no blue print for patient access.  Then I realized the metaphor of a cobweb was more sweeping than was intended.  Unlike orb spiders, cobweb spiders do not live in their webs; they just use them and abandon them.  I fear HIE’s may suffer a similar fate if the patient is not made at home within their structure.


I painted a circle of people holding up the web.  Peggy Graul is front and center since she brought us the conference.  Jeff stands, clipboard in hand to the right distant side of the web.  He stands beside our next speaker Andrew VanZee.  

Andrew is the statewide Health IT Director. He elaborated on Jeff’s point and informed us of his focus on folding rural communities into the structure of an HIE that was designed with metro areas in mind.

Next we had a lovely lunch.  They sat us all in the same room at long tables instead of table rounds.  It was great!  It felt a little bit like eating in elementary school when friends surround you. 


Next up was Sunny Williams, VP of business development Telemon Corporation.  This was a high level talk about technology and telecommunications and how they apply it to healthcare. I placed Sunny to the far back left of the painting.  Her speech was a good speech about an interesting topic, but seemed out of phase with the other speakers.  This crowd had a relatively low adoption of social media and needed more information focused on their unique needs.  I did tweet my disagreement with her statement: “Who has time for social media with all you have to do?  There is a paid (marketing) workforce that does it.”  Social media is always more real and therefore successful when it is done by the individuals within an organization.   If social media is done well, you will have more free time, not less.





Next Keith Kelley, VP Professional Services, Indiana Health Exchange began to speak and I painted him into the lower right side of the painting.  He was a great speaker and as he spoke the room became more informal with folks joining in shouting out questions and answers.  He added greater nuance to the words spoken by Jeff and Andrew earlier in the day.  

Giving examples of HIE was working in Indiana, he mentioned that some towns with competing hospitals are sharing info with their Cerner systems. He ended his talk with stating consumers would be the ones to change health care. While Keith spoke, I realized a focal point was missing from the center of the painting.  I decided to stick the torch from Indiana’s State flag right in the middle of the web.  It would act as a beacon to other HIE’s in the nation.  The torch shoots out sparks to its border brethren and in the distance we see the flags of Ohio, Illinois, Iowa and the United States.

Next Robert Hoyt, MD, Director of the Medical Informatics Program School of Allied Health and Life Science at the University of West Florida began to speak.  The last time I heard a speech with the breadth and detail that Rob gave was when I saw Eric Topol present at HIMSS in 2013.  His title was : “The Future of Health Informatics Don’t Blink.”  He covered so many things from sensors to legislation to culture. These were all important topics, but the part I painted was about a patient encounter.  Robert shared that when he was a young doctor he saw an elderly patient who had been seen by so many providers but not one of them had told the patient he was terminal.  Dr. Hoyt went over the man’s medical record and explained what things meant and that these tests and these treatments meant that he was dying.  The man thanked him.  The man just wanted to know.  So I painted the man holding hands with Robert.  The man’s bag is packed and he is ready to go.
 


The last element in the center above the torch is an LED light.  Right now in my life I am moving into a new house. The old 1930s light fixtures need 10-watt bulbs. 

A few years ago, that would have meant ripping out fixtures and replacing them.  Now with LEDs that is no longer necessary.  This is the beautiful thing about technology.  When it works well, it allows us to take more time for other things like caring for others.  It gives us the light to appreciate old-fashioned things and concepts, like holding hands while someone is dying.

Sunday, February 9, 2014

Tomorrow


On November 26, 2013 I arrived in the city of Saskatoon in the province Saskatchewan, Canada.  It was close to midnight when I passed through security.  The agent looked at my passport and asked about my business in Canada.  I told her I was speaking at the university.  She asked for proof.  I was taken aback as I have never had to prove what I was doing before on a speaking engagement.  I responded, “Are you asking to see my speaker’s contract?” She smiled a tight smile and said, “Yes, unless you want to come with me to the back office.”  Fortunately, I print out my speaker’s contracts and take them with me on trips.  So I handed over the correct papers.

Then she noticed I had declared that I had tools with me.  She asked what type of tools.  I responded paintbrushes, as I am an artist. She looked at me. 

“I thought you were a speaker, “ she said.  I said, “I am both.”  She asked if I would paint while in Canada.” I told her yes.  She then said, “You won’t be leaving any paintings in this country will you?”  I responded,  “No.” I usually leave paintings where I create them; but I could see discretion was the better part of valor in this situation.

So now it is February and I am preparing to mail a painting to the Academic Health Sciences Network at the College of Health Sciences in Saskatoon.  My contact asked me to explain the painting entitled: “Tomorrow.”


At most venues, I get to listen to other speakers and I paint about their words and the thoughts of the audience members.  At this event it was a pre-conference day and I was the only speaker.  So I set up in the hallway outside of the university library.  I began to paint on a gallery jacket to bide my time until the students spoke to me.   After painting for a while in silence, the custodial staff came over.  They asked some great questions and I told them about patient empowerment.  The students mostly walked by. They occasionally shared shy smiles and quickly averted their eyes. 

I have painted in pathways and hallways in South Korea, the United States and Australia.  It usually takes folks a while to walk up and start asking questions.  In Saskatoon, I spent most of my hours in the hallway alone.

So I painted the hallway.  I painted it with rapid brushstrokes as though life itself is zipping by.  I painted the snowy expanse outside.  There is little difference between the snowy ground and snowy sky.  I painted myself painting. 

Then I added the janitor who spoke to me.  He stands indistinct with one hand clenched and the other holding a mop.

Finally, I added the scholar behind me diploma in hand. She stands where I cannot see her.  The wind of the corridor whips at her hair and robe.  Her cap has been blown away. She firmly grasps her diploma high above her head, as if to say: “My eye was on the prize. I never lost sight of the goal.”

The scholar is based upon the twitter stream.

I tweeted my dismay that no one was stopping to talk to me.  One student tweeted back saying I should not judge so harshly.  She had seen me painting but did not want to interrupt.

I later spoke before a room filled with students and faculty.  Many people tweeted to the hashtag #sahsn13 that day, quite a few were professors, medical providers and patient advocates.  I even got to see a dear twitter friend @bonnycastle live tweet in person. Thanks to @symplur you can still see those tweets.  I looked up all the handles that were tweeting and it looks like only two students tweeted to the hashtag.  Only two students shared their thoughts publically with wider world during this opportunity.

So if this painting can tell you one thing let it be: Please interrupt!  Please speak out to the world that wants to speak with you.  Please set aside raised hands and patient waiting and embrace your voice.  Life is passing by so quickly.

Before you know it, it will be Tomorrow. 

Saturday, February 8, 2014

Companionable Silence


This coming week is Valentine’s Day.  It is a holiday for couples, so I feel somewhat out of place in its celebration.   As a single Mom, I get used to going to Cub Scouts and watching the other two-parent families play.  I get used to school forms addressed to the Parents of Isaac Holliday or Frederick Holliday III. I get used to a lot, but Valentine’s Day is not one of those things.

This holiday reminds me of those inexpensive heart necklaces we wore as children.  You know the type you gave to your best friend?  The necklace consisted of two parts: two jagged sides of one heart.  You supposed to wear one and so was your best friend; thereby representing the friendship was forever.

These simple necklaces and their jagged edges were an astute metaphor: when you lose your best friend all that is left is a heart torn in two.  Life goes on, but it is never quite the same. 

In the months after the death of my husband Fred, I watched every video I could find of him.  There were not very many as he was usually the cameraman.  My favorite video was filmed in the Casselman Bridge Park in Grantsville celebrating our engagement in 1993.  There is 30 minutes of somewhat shaky video of Fred, his family and I.  It is high summer and we were so in love.  My favorite part of the video happens when the cap is placed on the lens of the camera.  The tape goes dark.  Fred forgot to turn it off and placed it in the back seat of the car. 


You can hear the engine rev to life.  We drive away in companionable silence with only the occasional word being said.  I remember we were holding hands; my memory recalls the details the camera could not.  The sounds of traffic, the drone of the insects and a few quiet words fill the end of the tape.

This coming week is Valentine’s Day.  The Rotary Club of Grantsville is having a special meeting. We were all told to invite our spouses or some other important person in our lives.  My eight-year-old son Isaac said he would go with me.  I am thankful for that.

I am thankful for so many things as I live out my life.  I am thankful for the love I have known and that I still can cherish companionable silence.  

Sunday, February 2, 2014

Tip Jars and Sustaining Members


In my line of work and type of advocacy, I get a lot of requests for pro bono work.  I support my life’s mission and a family on the money I earn from painting and speaking.  Though I am always trying to add to the public good, I can only agree to a few pro bono gigs per year.  Some of the venues that ask me to present are small hospitals, non-profits or universities that can only afford to pay travel, lodging and my babysitter’s fees.  I work with these folks because I so deeply want to help their mission as it aligns with my own.  We want to help patients have better lives and end of lives.  We want medical professionals to have joy in their work as they help others.


Some venues don’t have any money for patient speakers.  They cannot afford to pay for travel or lodging or anything else.  They may be very small and operating on a shoestring budget.  Or they could be very large but their advocacy is far reaching and the funds are pressed thin.


For the past two years @HIMSS has asked me to speak.  For the past two years HIMSS has paid my travel and lodging.  This year they cannot.  They would like me to speak, paint and spread the patient story far and wide but there are no funds for travel.



I did the math.  If I sleep on a friend’s couch or even bring a sleeping bag, I could go to Orlando #HIMSS2014 but I need to spend $850.00 out of pocket on travel and sitter’s fees.  I told my friend @ePatientDave I would probably bring a tip jar to set next to my easel in an effort to defray the cost.  Hey, it works for musicians on the subway.   Why not work for an activist artist at an informatics conference? 

Then a friend on twitter asked me if there was a way to donate towards my work.  Did I have a @gittip account?  I did not.  But her question intrigued me.  What was Gittip?

Well, I went to their homepage and my world was rocked!  It is a sustainable crowdfund! I wanted to fistbump the entire Internet! I have done crowdfunding before with great sites like @Medstartr and @Healthtechhatch, but that is a campaign specific and the funds I raise usually go to help others.  Here is the explanation from their page:

"WHAT IS GITTIP?
Gittip is a way to give small weekly cash gifts to people you love and are inspired by.
Gifts are weekly. The intention is for people to depend on money received through Gittip in order to pay their bills, and bills are recurring.
Gifts come with no strings attached. You don't know exactly where your gifts come from, and the maximum gift from one person to another is $100 per week.
Gifts are public. The total amount you give and the total amount you receive is public. Participants on both sides of the equation are rewarded publicly for their participation. (You can opt out of publicly displaying your total giving.)
Give by answering Who inspires you? on our homepage, and following the steps."


Wow!!! This could make a difference in the lives of so many patient advocates and speakers.

So here is my virtual tip jar: https://www.gittip.com/ReginaHolliday/

If you like what I do and want to support it in an ongoing way, this site is for you! 

Thank you everyone at Gittip for your valid work.  So many individuals in crowdfunding feel the shame of holding the beggars bowl; you have rebranded that bowl into a jar we can all be proud of.

**************************UPDATE*********************** 12:31 Feb 2, 2014

Just two hours later and folks are already donating!

@Sphere3 has already offered me a hotel room for HIMSS14!

God is good! I am so thankful and blessed to have such wonderful friends! What a great way to spend a Sunday.