Freddie’s Jacket: Old Memes, Death Notes and Over 9000 infections

We love our Mac computer.  After several years suffering through viruses and horrid lag times, we purchased a Mac computer in March of 2009.  My husband Fred and our son Freddie loved it and immediately tried out the photo booth function.  Fred thought it was wonderful.  And one of the greatest tragedies of his illness was the fact that he only got to use his new Mac for 14 days before he was hospitalized.

For the past two years the Mac has patiently endured constant use by either Freddie or I.  And we research arcane topic after arcane topic… and sometimes our topics crash into each other and provide enlightenment for us both.

Is “HAI” a Hospital Acquired Infection?  Or is it Japanese for yes? Or is it lolcat for hello?

Is Portal a video game that was released in 2007?  Or is it the preferred method for patient access to the Electronic Health Record?

And is the IOM Report: To Err is Human published in November of 1999 an “old meme?” 

Perhaps a definition is in order… Old meme is defined by http://ohinternet.com as: “An old meme is any expression or idea that has outlived its ability to be funny, or has become so overused that its use is frowned upon. Old memes are used by moms who just found Hamster Dance yesterday, Cheezburger Network sites, YouTube users who don't know when a joke has overstayed its welcome and /b/tards who just don't know when to quit using all your base.”

Sometimes the term the IOM report and a reference to its content are used so much in patient safety conversations, that the reference loses the original impact and meaning it had upon it the health community.   I explained the content of the report to my 12-year-old Freddie and he decided to be a Walker in The Walking Gallery.

Freddie decided to stir things up a bit.  He thought there was a perfect pop culture analogy to the IOM Report. 

Death Note.

Death Note (デスノート Desu Nōto?) is a manga series created by writer Tsugumi Ohba and manga artist Takeshi Obata. The main character is Light Yagami, a high school student who discovers a supernatural notebook, the "Death Note", dropped on Earth by a god of death named Ryuk. The Death Note grants its user the ability to kill anyone whose name and face they know, by writing the name in the notebook while picturing his or her face.  –Wikipedia

Freddie thought this would be a powerful statement.  98,000 names, 98,000 people dying every year from preventable medical errors, and are people marching in the street about it?  No.  It has become an old and well-worm meme in the world of patient advocacy.  Say “over 9000,” or any other arbitrary high number, in reference to medical error and death, and watch eyes glaze over and minds refuse to comprehend the level of tragedy.

This is why the individual story is so important.  I can speak of my Fred, Valarie Barnes can speak of her Justin, and Ted Smith can speak of his Mother.  Those single stories can help people to self identify. Freddie can speak of a fictional character like Light and explain the anguish a character feels when death is only a name away.  Sometimes he won’t even have to speak.  He can just walk by, and a Death Note fan will understand the powerful danger of being a name in that book.

David Hale saw this jacket a week ago.  His mouth dropped open and his eyes opened wide.  This jacket was geeky chic, powerful and cool.  And that combination can affect people.

Do old memes really matter?  I think they do.  I think there are a lot of Mom’s who are still discovering dramatic chipmunk or finding out about the dangers of MRSA. Last night, Freddie was looking up another old meme: “Chuck Norris” and this is the result of that Google search. 

We laughed aloud.  Freddie promptly typed in “Rick Roll” in the Google search field.  Within moments our apartment filled with the melodic tones of Rick Astley singing, “Never Gonna Give You Up.”

We had just been “Rick Rolled” by Google.

We laughed again.  Freddie and I both agreed we love Google.  We love that that they play with the form and recognize the power of memes.  I also love that when the health staff at Google realized people were using their search engine to find the number for poison control during an emergency, they changed their search page.  They placed the 1-800 number for poison control first on the landing page, not buried within the search results.  They did so with a striking visual: a red emergency phone icon.

I hope Freddie can do the same for the IOM report during The Walking Gallery.  I hope he can be that striking visual that redirects the searcher to the right information, and in so doing, saves lives. 

The Walking Gallery

We are the Gallery that walks.  We are the Patients that wear our stories on our backs.  Soon we we shall to come to a city near you and and create gallery space in moments.  We won’t pound a single nail into the walls to hold the art.  Dozens of people will walk into a space wearing business jackets or doctor’s lab coats.  That alone is not unusual.  But these jackets will be works of art.  Each one shall be painted with the story of a patient or an element of medical advocacy by me or another artist.  These masterpieces will be worn on the backs of government employees, technology gurus, medical professionals, social media activists, CEO’s of companies and artists.  It shall be a great meeting of the minds.

The Walking Gallery exists because Jen McCabe followed me on Twitter on May 30^th 2009.    That was the day before I placed the Medical Facts Mural in Pumpernickels Deli on Connecticut Ave.  That was a day when my Fred was still alive and could speak and eat again because of the wonderful care he was receiving in Washington Home Hospice.  Jen was one of my first followers on Twitter and is such a glorious spark of life.  

On August 20^th she emailed me after I had posted a comment on her blog and asked me if I would paint a series of paintings on the back of her blazers to wear to upcoming health meetings.  I told her I would be honored to paint jackets for her.  Jen responded, “Symbols and talismans mean quite a bit to me, and having things constructed by friends is one way to remind myself why I do the work I do and forego so many of the other things I enjoy.  I'm so happy to have a wearable badge of courage - just wrote an index card for myself to remind me of the importance of patient advocacy by "any means necessary."  Art is another one of those means.”

I finished the second mural “73 Cents” on September 30^th 2009.  It was my feverish obsession in the weeks after Fred’s death.  “73 Cents” was a thing that I had to do.  It soothed my soul; it spoke to me and calmed my aching heart.  It gave me a reason to leave the solitary confines of my mind and my widowhood.  It gave me permission to stand on the street and talk with complete strangers about the grief roaring within me.  I often go to social justice events and hear about the chronically homeless on the street.  I hear workers complain that they find small single apartments for these folks to live in, but instead many return to the street. 

I think I know the reason why. 

It is hard to be alone when sadness is engulfing the mind.  The street is alive, and there the broken congregate and help each other.  Each day I painted I made many new friends, but those who came back and spoke to eye to eye were often the most dispossessed and the homeless. 

Without Jen’s suggestion that I paint jackets, I would have gone home, my Magnum Opus done, to loneliness and grief.  Yes, I was still blogging, but that was not enough.  I had to paint.  I had to spread the word through art.  Jen had provided a new “wall,” and that wall could walk into the Mayo clinic or the National Board of Medical Examiners and remind everyone of those patients who suffer in a system without real time data access.

I would paint and post images of three jackets for Jen:  ”Data Prison” on October 5^th 2009,

“Titanic” on December 14^th 2009

“First Responder” on January 12th 2010.

As Jen and I began to tweet about the jackets, Elizabeth Cohen from Empowered Patient on CNN would see our twitter stream.  She said she would write a piece about the jackets on CNN health as they captured the zeitgeist of the patient data access movement that @ePatientDave had so apply entitled: “Give Us Our Damned Data.” 

Due to Jen’s very public appearances wearing patient advocacy jackets, two other thought leaders would contact me to obtain images they too could wear.  Chiara Bell from Enurgi, later to become part of Univita Health, would ask to have a jacket of her own.  She wanted to show the importance of the caregiver in patient care.  I made for her the “Caregiver’s Clock” a painting that depicts both the family member as caregiver and the professional caregiver caring soothing the terminal patient.

Finally, Roni  Zeiger from Google Health would contact me.  He wanted a jacket that depicted the passionate need for data access felt by the patient/caregiver.  I painted for him “Data Cloud” that recreated my desperate feelings to find out the truth via the Internet.  Roni Zeiger then wore that jacket at the Community Health Data Initiative event on June 3^rd 2010 before a crowd of hundreds including Secretary of HHS Kathleen Sebelius.  Roni would finish his presentation about the Combining of HHS Hospital Compare with Google’s Fusion Tables Cloud Database App, by turning his back on the audience and saying, “The last thing I would like to mention is that, let’s not forget all of these data points tie back to individual people and their stories.  And many of you probably know of the work of Regina Holliday.  She is an incredible woman I met recently.  An artist. She made- I am not a fashion guy, but she made this jacket for me.  Feel free to come up after to get a closer look.  We made a deal.  She would make this jacket for me, if I would wear it at important conferences.   This is the first time I am wearing it.   And it is about the importance of data and the importance of talking about data and the importance of technology in the future if health care.”

So, that is the story of five jackets that I painted to spread awareness.  Five jackets. They bring the “patient” into the room and onto the panel, when no patient was invited to attend.  They remind me of the encaustic mummy paintings from 1^st century CE found in Egypt.  These amazingly real and poignant faces stare out above dried sinew, wrappings and bone.  Their eyes sear our souls and remind us, I was once one of you who lived and played, who laughed and loved before I met this fate.   They transcend the dust and the darkness of the ages, and make the lives lost long ago so very real.  The jackets worn by these brave few do the same for data, and pie charts and graphs. 

When you sit in an audience listening to a power point presentation, and the faces on these jackets stare back at you; it changes things.  It adds an edgy sense reality to dry recitation of data.  It wakes you up.

Perhaps you will have the honor to wear one of these creations.  It can be quite unsettling.  People will stop and stare.  You can now enter a conference and feel like an outsider.  Ostracized.  You can be given the gift of experiencing the disconnected feelings of the ignored patient in the room.   People will point and talk about your back like you are not even there.  You are a “case,” an object, you exist to be described and critiqued.   And after being at a conference all day, you can take that jacket off, and be normal again.  Or not.  You can “come out.”  You can let go of that other title, be it, Techie, Doctor, CEO or founder of a non-profit.  You can cease to be defined as the cog you appear to be in the machine called medicine.   You can be simply patient.  You can tell your personal story and reach your inner center as a patient.

Perhaps my painting will help you.  Perhaps it will be the icebreaker you need to let go of the ubiquitous black suit that blends in at a medical conference.  Perhaps it will be way to open up about why we are doing all of this important work.  We are doing this to help patients heal.  We are doing this so we can all live happier lives.

So… CALLING ALL JACKETS!  CALLING All ARTISTS! I need your jackets, I need your stories.  I need other artists who would like to join a movement.  Never let anyone tell you, that you do not have a voice.  Step up and Speak out.  We get great change by doing great things.    You will be surrounded and loved by others just like you.  It shall be a great fellowship of those deeply invested in patient empowerment.    

And then you shall go forth and wear your jacket at other conferences spreading the word about the importance of patient data access and truly patient centered care.  And sometimes you will be the only “patient” in the room.

But you will be brave and you will be proud, for you are a member of The Walking Gallery.