The Open Door

On Friday I was painting a picture of blood in a park.

It is a beautiful painting that seems at first serene, but as one looks upon it more deeply there is an undercurrent of stress.  It is the jacket painting of Gina Neff.  The title is “Under Pressure. “  I painted this painting under a deadline.  I would be giving it to Gina at the Health Foo gathering in Boston that evening.  I painted while listening to an NPR report an ever-widening lock down in Boston.  There was a manhunt for the two fugitives who were believed to be behind the Boston Marathon bombing several days before.

So I painted blood where it should not be.  Gushing in the park.

Gina Neff suffered from preeclampsia when her twin boys were born.  Her blood pressure was dangerously high after the births and did not return to normal levels for weeks afterward.  There was a danger she would have chronic severely elevated high blood pressure whilst caring for twin newborns.  So she is painted with the stress of pushing two carriages while her blood pounds within her.

Then normality returned to Gina’s life.  One day her heart calmed and the world continued.

As I put the finishing touches on this painting, I listened to the growing tension in Boston.  I checked my email to see if the Health Foo event was still on.  It was still a go, so I threw my clothes in one bag and threw my paints into another.  I then received an email from my friend Susannah Fox who was also going.  I was supposed to room with her that night.  She wrote to say she had re-booked her flight for the following morning. Okay, I thought. Now, I had no place to stay.  Hopefully, the hotel would have spare rooms.  I lugged my bags to the curb and hailed a cab.  Then I called my friend Ted Eytan.   He assured me he was still going, so I responded if the two of us were going to be there, the conference would go on.

When I landed in Boston I checked my email to see that event had been cancelled due to the continued lock down.  I waited for Ted’s plane to land and followed the tweet stream for #healthfoo.  Danielle Cass had just flown in from California and did not relish the idea of heading right back.  When Ted landed we both encouraged Danielle to stay as no matter what.  This event should not be derailed.

That evening the remaining members of Health Foo met at the Royal Sonesta Hotel for light refreshments and drinks.  I walked over to Gina Neff and handed over her new gallery jacket and was told I could room with her that night.  What amazing friends we have within the world of health and social media!  Soon Sara Winge VP of O’Reilly Radar group and co-founder of Foo Camp came carrying her sorrow and a box of books for attendees.  The other materials were locked up inside our closed venue.  We had no nametags, no markers and none of the supplies to rebuild an event from the ground up

That did not stop us.

We borrowed a white board from the hotel and began to plan the next day’s event.  Sara got us started with a few words.  Then we did the traditional introductions of each attendee around the room.  We decided that the next day we would begin by having brunch.  Then we would walk around Boston for a few hours as a Walking Foo (or Walking meeting).  Then we would meet around 2 and hopefully have a venue by then.  Several local attendees would ask around to try to find a place that would allow us to meet with no notice.  We would communicate the real time status of the event on Twitter, Facebook and through texts and anyone who wanted to join us was invited!!

Next we proposed session topics.  We filled the unconference board and decided to present a few ignite speeches without slides. Danielle Cass’s speech about work life balance and her new role at Kaiser Permanente was a type of catharsis for her and many other struggling souls in that room.  She was brilliant.  Our unconference sessions continued until Sara told us the hotel needed the room back and then our excited conversations continued in the hotel lobby well past mid-night.

The next day was Saturday and the Health Foo group split into two parts, some of us eating brunch at Friendly’s and some at Area Four on Main Street.




Very soon each group set out walking.  We were blessed to have 15-year-old Abigail Boone in our group. As her father Keith Boone was willing to let her walk with us while he was in the other group.

We came across the make shift memorial for the fallen MIT officer.  As we stood there taking photos, Abigail drew a small picture and laid it down as a gift upon the growing mound of flowers.  Then we walked away.

We walked as octopus navigates the ocean floor, our form changing and reforming.  I would talk with Ted, then Hugh, then Danielle Cass, then Danielle Gould, then Chach and then Abigail...  Abigail is a student studying forestry and as she walked beside me she explained the growth of calluses on trees and pointed to ‘cancer’ on a trunk.  I walked in awe beside her.  I learned so much from a 15-year-old girl who would have never talked with me if this had been a traditional Health Foo.

Soon we met with the other group coordinating via twitter and Google maps.  Anna Young from Little Devices told us she thought she could get us into a space at MIT.  We walked over to the new space.  It was perfect!  We filled out another unconference planning board Fred Trotter took charge of this process and was amazing.  I attended Ted Eytan’s session on transgender experiences and I began to paint.

This is the painting “The Open Door.”

This is the Boston I saw upon arrival: the streets devoid of cars and the buildings in lock down.  Then the campers begin to walk upon the street as it buckles and bends in a crazy life ride. In the distance there is an open door on a building marked MIT.

One walker holds a transgender hula-hoop.  A hula-hoop is toy that is only enjoyed while in constant motion. Always recalibrating to keep it up.  I thought it a good metaphor for the constant frustrations of the transgender patient seeking medical care and respect. 

Soon Hugh Montgomery would talk with us about climate, global warming and the power of wind energy, explaining that if Tylenol would just become available in smaller milligram tablets it would save energy in manufacture.  

I began to paint the police tape that littered the ground as we walked earlier that day.  It had joined the piles of windblown trash that made Abigail so sad as she saw the waste of our industrial world overlaying the roots of her beloved trees.  We then talked about the future of education and a little red schoolhouse entered the picture.  Soon it was 6:00pm and time to wrap up this conference day.  I went to dinner with Ian Eslick and several other amazing campers and we talked about programming code a good part of the evening.

The next day I met Ted for breakfast and happily looked back on the weekend thus far. We were so glad that we had been able to encourage others to embrace the failure of a plan and build something great from the remains.  I told Ted, this wasn’t that hard for a patient to do; after all, we have nothing upon entering the world of care.   We have no space to call our own; we constantly must move, never sure where we will end up next.  A Health Foo unconference created on the go was nothing new to the patient and family caregiver; it was the care model as we knew

it.

Soon Ted and I met the small Sunday morning crowd at MIT.  Ted proposed a session to teach those who did not know how to tweet the wonders of twitter.  Ted took Hugh Montgomery under his wing and I began explaining Twitter to Gorden Bell.   He then showed me his self-tracking devices, which I tweeted out to the world. By the time an hour had past both gentleman were sending tweets and following accounts.  

I returned to my painting and painted two young men building a go-kart on the left of the painting just as they were doing in the left of the room.   Then I participated in a final session on the importance of tracking heart rate variability.  The session was presented by an engineer and given to two doctors, another engineer and to this artist who only attained a high school degree. 

That was pure Health Foo.

You see Health Foo brings us together: the smart techie, the artist, the doctor, the designer.  In this moment we are all equal. We are all valued and from each of our singular natures we make a greater whole.

So I signed this piece and gave it to Anna Young for her willingness to host us inside her maker space.  She was so happy she began to cry.  Her whole face beamed with joy.  Her blue eyes were an endless sparkling chasm; an open door.  For when Anna unlocked the door to MIT that day she created a moment of communion and we are all greater for it.

As my friend Ted has said, It is the greatest cancelled event I have ever attended.  It was an amazing weekend.  It was a moment to recharge the batteries of so many of us who after weeks or months of travel and teaching needed to feel the embrace of great friends and agile minds.

We found in this gathering the peace that Gina found in her post partum home.  We found the peace that I hope Boston will find as well.  Our hearts calmed and the world continued.   

The Enemy's Gate is Down

Beginning Friday May 18 thru Sunday May 20th, I had the honor of attending the 2nd Annual Health Foo Camp in Cambridge, Massachusetts.  This is an un-conference organized by O’Reilly Media and the Pioneer Portfolio of the RWJF (Robert Wood Johnson Foundation.)  It is a free private invitation-only event hosted on the NERD (New England Research and Development Center) campus at Microsoft.

I was overjoyed when I was invited, because I had seen amazing tweets about this last year.  I was doubly happy to find it was truly a camp.  Attendees could bring sleeping bags and sleep on the floor.  Limited scholarships were available to pay for travel.  This is a really big deal in patient advocacy circles.  Often we are invited to events that we cannot afford to attend without travel and lodging.


Day 1

I took the train and arrived with my various bags and my easel.  I looked so odd walking into the NERD building that a staff person glanced at me nervously upon my entrance.  I went upstairs to the camping room and I began to assemble my easel to the soothing strains of David Hale on his Ukulele.

I was painting a canvas for Roni Zieger (that I had been working on since TEDMED in April) when Paul Tarini from RWJF came into the room.  I mentioned my great joy that his organization received one of my favorite paintings from the TEDMED event: The Unmentionables.  He asked my impression of TEDMED, as it was my first time.  I responded, “Well, I might have a unique view as I painted each session, so was analyzing the event in real time.  Also, I wrote about the entire conference in 12 blogs in the three days after the event.

What jumped out at me was that was that women were underrepresented, in both quantity of speakers and type of presentation.  Woman often presented art, music, human interest and other “soft subjects.”  I was dismayed after the event to find other writers using 2-4 sentences to describe male speakers, and only using one sentence to describe women.  I asked one author about it, he said it had nothing to do with gender and everything to do with content.”

I also noted that patients were under-represented as well.  But I am hopeful this will change next year. 

I did praise the flexibly of TEDMED to grow and change.  They were willing to take a chance on this little disruptive artist.  They gave me a great location in the social hub to paint.  They did not try to muzzle or censor me in any way. They supported me by allowing an onsite assistant.  Kait B. Roe help tweet, while I painted.  TEDMED planning staff so enjoyed the art process that midway through the conference Shirley Bergin suggested I paint one more canvas so we could give one to each of the 12 major sponsors onstage during the last day.  I have great hopes for TEDMED 2013.

Soon more people filled the room and Roni saw me complete his painting before his very eyes.  






Then Ted Eytan, my best buddy in destructive creation, arrived. The conversations grew in volume as I pulled out my next canvas.  This would be the painting “Community.”

I began to paint this in the evening of the 18th as we all introduced ourselves using the twitter method of an un-conference.  You are supposed to state your name, title and where you work/what is your mission?  Then you say the three words that define you or spark interest.  I painted while listening. The introductions snaked around the room through the rows and rows of chairs.  Most people had a real problem with the three-word rule.  


Finally, it was my turn. I was standing beside a seated row. Before I had a chance to speak, the first person on the next row jumped up and took my turn.  I jumped in next, saying: “Regina Holliday, Patient Artist Advocate of the Walking Gallery.” Then holding out my canvas to face the crowd I finished with: “One. Thousand. Words.”  After introductions, the lovely young lady wearing a great pair of glasses said she was sorry she skipped me but had thought I was not a camper, instead thought I was staff since I was painting. 

I run into this problem quite a bit at conferences.  I am short and off to the side often times.  I am painting the event as I listen.  Often I am perceived as the paid help, rather than an attendee.   This can be advantageous though; I am often amazed at what is said openly before the help. 

Soon it was time to rush the unconference board with suggested break-out section topics.  So I looked up at the board and saw the portrait orientation of the slot I wanted on Saturday and quickly created a session entitled: “So you want to start a Revolution? Art, Data and Bubbles.  Once I placed it my session sign I mentioned to Ted that most of the other suggested topics had been placed in a horizontal orientation even if though did not fit the time slot.  He told me, “Look at the text on the paper.  It is written in a horizontal fashion.”  So in the minds of the majority orientation was determined by text.  Whereas, I chose based on establishing what space that was available.

Which reminded me of Orson Scott Card’s Ender’s Game and its philosophy that “The enemy’s gate is down.”   Based on the tech-fueled conversation that filled the next two days, I am betting most of the folks at this event have read Ender’s Game.  But if you have not, in brief, it is a Hugo award-winning science fiction novel written in the early eighties.  The US Marine Core has embraced it as required reading, as did gifted and talented school programs throughout the US.   In this book a small young boy, who is incredibly bright, goes to battle school where he fights a virtual enemy consisting of insect aliens using gamification techniques.  He also fights other children in zero gravity environments.  He is assigned the task of creating a winning army out of rag-tag rejects and does so.  He grasps a concept that eluded others.  Upon entering the battle room most children oriented up and down based on the gravity of the outside corridor.  He reminded his team no matter the orientation of the outside world when they hit the battle room: “The enemy’s gate is down.”

I would spend the rest of this conference studying orientation.

I slept that night on the floor, which was rather hard on these 40-year-old bones.  




Day 2


Then Ted met me at NERD and we had a rousing walking meeting first thing in the morning. After breakfast I attended my first session with my easel.  We talked about sensors, as they relate to the quantified self.  It was a rather confusing session for me at times as they often said QS and in my world that means quality and safety not quantified self.  Which made for some rather odd mental constructs in my mind. 

All the while I began to paint the camp logo as a seesaw, and embellished it with a circuit and money. I was hearing about the glory of tech and the pursuit of the mighty dollar but not a lot about reducing harm.

Next I went to “Icon Salon: New symbols for health” a session focused on creating simple images hosted by @chachasikes.  So we spent the next hour drawing and talking about cultural symbols. 

Then I left to I host my session.  After I waited in a room by myself for about 5 minutes, I began to draw a female figure on the white board to wait with me.  After 10 minutes, Roni walked in and we began to speak about revolutionary art ideas.  Then at 20 after David Hale walked in.  We spoke about a poster campaign to help patients.  Then we discussed strategy around creating Hospice Cards, because there is nothing between “Get well” and “Sympathy.”  Then we got on the topic of no wifi at many venues, whether it be hospice or TEDMED.  We came up with a plan to address that problem and bought the domain name #WTFNoWiFi during our session.  Then we began discussing a speech recognition error in the electronic medical record known as "Labia Menorah" not caught in an editing process.  I decided this must be the name of the female figure on the white board.  We talked about creating a website and art series on drug effects adverse or positive. Then Lygeia Ricciardi entered the room and we ran these ideas past her.  Finally we closed with my performance of the spoken word piece I wrote at TEDMED entitled “Spit.”

Then we cried a bit.

Next I went back to my easel and painted while Nicholas Christakis spoke about the social evolution of networks.  I painted constellations in the painting with Twitter birds flying from camp attendees to reach their network of friends.

Next Gilles Frydman and Roni entered the room to host a session called the “Networked Patients and the transformation of science.”  I finished the community painting during this as we discussed the wonder that is ACOR with Dave DeBronkart and I explaining our patient experience in the group.  Many in the audience were amazed that a patient community could have conversations with scientific rigor. Sigh.

Next one of my favorite sessions was about data.  This session was a wild collaborative conversation that represented what an un-conference is all about.  We talked about big data, aggregating data, the role of non-profits, the role of private enterprise, the MIB and autopsy rates.  This session rocked.

That evening the ignite speeches began.  Ignite speeches are 5 minute speeches with a slide deck of 20 slides that advance every 15 seconds.  Ted and I had wanted to do one together, but ran out of time the week before.  But when the speeches began we could not help ourselves.  Ted pulled out his Mac and we hacked our decks that were posted on slideshare into an ignite deck.  I then was last presenter and the energy was amazing in the space.  Yay! Patient/Doctor partnerships!!!

This night we all walked over to a local pub and had drinks.  We had amazing conversations walking there and I got to talk to campers that I had not really spoken with before. 


Day 3

The next day Ted Eytan and I enjoyed our morning walk with Claudia Williams before camp began.   Then we went back to the un-conference where I hosted a session called “What does Faith have to do with it?: The Role of Religion in Medicine.”  Now I think this topic was a bit too disruptive for folks who self-define as disruptive.  Many of the people I invited were not interested in talking about God on a Sunday morning.  Well, if I have to miss Church to attend Foo Camp, I can bring thoughts on God to Foo. 

Also we free-painted the entire session.  It was amazing.  There were six women artists in this session including myself, Susannah Fox of Pew Research, Lygeia Ricciardi from ONC, Marya Zilberberg, MD EviMed Research Group, Chacha Sikes of Food Cards, and Kyna Leski Professor and Head of the Architecture Dept. at Rhode Island School of Design.   





We talked of faith, Stephen J. Gould, lucid dreaming, hands and participatory art.  Once again I studied orientation within this piece of art collaboration.  There is no up; there is no down.  This piece simply is.


Soon Ted would host a session focused on writing nomination letters for me.  The GAO Government Accountability Office was accepting nominations for an advocate to assume an unpaid position as a patient or consumer representative in HIT policy discussions.  Ted crafted his letter on the spot.





Soon after it was lunch.  We talked in a small group about philosophy and power with Susannah Fox, Claudia Williams and Jamie Heywood.  And here too, we cried a bit.

Then it was time to say goodbye.  Paul Tarini and Tim O’Reilly sat in the spacious wooden staircase/auditorium seating area.  The campers gathered around on the floor space in front.  Here the attendees were the speakers and the hosts were the audience.  So that was the last flip of orientation and expectation.

The conference was over and we ceased to be only foo.  We were released from the role of the variable or a placeholder.  We left that space and began to solve the equation of health.

Lessons learned: Never forget the world of HIT is a new space, the status quo of the corridor is behind us and the enemy’s gate is down.


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btw, I welcome crowd-sourced editorial comments.  I often write these posts between doing dishes, folding clothes and monitoring the escalating foam sword battle between my two sons.  Sooo, occasionally I will misspell or completely misapply a name and I really appreciate it when you point that out.  THX!