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.   

Three Asks: One Blog

Well, June is almost upon us and with June comes our third gathering of The Walking Gallery!!!

I have three major asks within this blog and I know many of you are pressed for time so:

1.     Please register to attend the June 2, 7-9 pm gathering of The Walking Gallery 3, at St. Paul’s Lutheran Church, 4900 Connecticut Ave, NW Washington, DC

2.   

Dear Friends,

Gregory Downing and Lygeia Riccardi brought to my attention that scholorships were now available for this event so we are no longer having a flash mob walk at Health Data Palooza.  Instead apply for a scholarship and attend and walk if you are inspired to walk and chat if you are inspired to chat.

Here is the link: http://healthdatapalooza.org/get-involved/how-consumers-and-patients-can-participate-in-the-health-datapalooza/

3.     Donate to theMedstartr fund to create a Mini-Documentary on the Walking Gallery

The Walking Gallery 3

For the past two years The Walking Gallery gathered in the Kaiser Permanente Center for Total Health.  It was a great venue for the first two years.  Thank you Kaiser Permanente for your gracious support!  The first year we had 54 Walkers wearing their jackets.  The second year we had over 80.  

In our third gathering I hope to see over 100 Walkers and many additional guests.  I attended quite a few conferences this past year where thought leaders in medicine wondered how to activate regular people within their communities.  I also attended a lot of conferences hosted within nice governmental buildings or grand hotels; those individuals running these meetings asked how we could involve people of faith and places of worship in the larger dialog of patient rights and engagement.

So… The Walking Gallery 3 will be held in St. Paul’s Lutheran Church in Northwest DC one block from the Mural 73 Cents.  My younger son was baptized in this Church and we held my husband’s memorial service here.  The school beside the Church is Murch Elementary.  Both my son’s attended this school and I have volunteered there to help with many art projects in the last nine years.  I am so glad to welcome the world of medical advocacy into our local community.

We will gather at June 2^nd, 7:00pm have light refreshments.  We will share our stories.  At 8:30 we will walk across the street and re-dedicate the mural 73 Cents.  It will be a Blast!!! This will also give us a moment to recharge and reflect on why we care so very much about patients and positive change in healthcare.

In case any of you wondered why we have our biggest gathering in the beginning of June each year, it is because we host it right before the first day of Health Data Palooza since so many like minded folks would like to attend both events.

The Walking Gallery: Mini- Documentary

Finally, I began a new Medstartr campaign to fund a mini-documentary of the Walking Gallery Movement.  These funds will pay the amazing film-makers for Eidolon Films: Tessa Moran and Ben Crosbie as they create a piece that will include interviews with walkers, conversations with artists and explain the technical process of creating a gallery jacket.

Thank you everyone who can support these amazing causes!  Onward and Upward!

Ten Thousand Hours

People often ask me when did I begin painting.  They ask, “Did you paint before your husband died?”  I tell them, “I have always created art. I drew; I painted as a small child.”

Have you ever read Malcolm Gladwell’s Outliers?  In that book, he makes the case that 10,000 hours of practice are needed for mastery in many art forms and skills.  He mentions the success of Bill Gates has deep roots in early access to computer technology.  He references the 1,200 live performances the Beetles gave in Germany prior to their fame. He makes the point that mastery requires practice and opportunity to hone skills.  Since the Outliers book was published some detractors have commented that really 25,000 hours are needed.  Or they say that luck and nimble thinking is far more important than years of practice.

I think we need both.  I think we must devote hour upon hour to our chosen art, but we must be willing to spin on a dime and use our skill in a new way when circumstance or opportunity presents itself.

Which brings me back to childhood.  When I was in first grade I spent every recess drawing on the brick wall at Washington Elementary.  I drew on this on this playground. 

It is a lovely thing to draw or paint upon the playground and recently I did such work with the children of Murch Elementary.

My son Isaac is a first grader at Murch; but I have been helping that school with auction art for 9 years.  Each year, I go into classes and ask the children what would they like to create for the auction project.  We talk about Return on Investment.  How much will the materials cost and how much can we make on the project.  We talk about which subjects would they like to paint, that their parents would want to buy.  IE, though it may be fun to paint Pokemon, will many parents want to buy that?

The children create a list of about ten topics that they would be interested in painting about.  Then all heads go down as we do a blind vote.  We narrow it down to three choices, everyone looks up and we talk about the three topics and do a second blind vote.  The winning topic will be the subject of the painting.  This year I completed this process with four classes at Murch Elementary.

Fourth Grade: Ms. Mathur’s Class

I have partnered with the teacher Ms. Mathur for several years on such projects.  She is always such a joy to work with. This year Ms. Mathur’s class wanted to focus on the coral reef and tropical fish.

They wanted to create the tropical reef using a 3-d effect they were taught last year by art teacher Miriam Cutelis.  The students had such fun immersing their hands in glue and sculpting the 3-d elements.  Then they worked at their desks creating fish paintings.

Second Grade: Ms. Hsu’s Class

I also was able to work with Ms. Hsu again this year and she was excited about the topic.  Her class decided to focus on the rain forest.

They painted the many small animals and insects that populate the canopy and painted the trees using masking off and sponge painting.   The students loved pulling the making tape of the tree trunks and revealing the painting.

Second Grade: Ms. Stephens Class

Ms. Stephen’s class chose a very elaborate project with the support of their teacher.  The students wanted to create a project that incorporated Habitats, Native American’s, Solids and Liquids, Weather, Insects, Simple Machines, Biographies and the elements of a book.  Where do all those topics meet?  In an encyclopedia!  So we did a piece of art based upon an encyclopedia from 1920s. 

The first step was to have a dress up day in period costumes. Room mother Kim Webster did an amazing job in helping the children into the many layers of dress that would have been appropriate for an encyclopedia at the turn of the century.

Each child posed in a dignified manner as we took each picture.




Then those pictures were printed in black and white onto rice paper and the children hand colored them in the classroom.

First Grade: Ms. Werner’s Class

My son Isaac is in this class so I volunteered my services to Ms. Werner early on.  These first graders had a novel idea.  They wanted to focus on currency from around the world.  So children brought in coins from many nations and we did coin rubbings on rice paper with crayons.  Then I cut out a world map and handed each working group a continent.  We mounted clay machines around the classroom that extruded thin layers of polymer clay.  Each group was given a wide array of color to cover their continents in Sculpey clay. Then they pressed coins into the finished world to create another series of coin impressions. 

To create continuity of form and to reemphasize the children’s focus on currency, I dusted the work with a gold powder.  Then I baked each clay continent in my home oven.

The Playground as Studio

When I do auction projects with classes, I try not to take away too much instructional time.

As some of these projects were quite elaborate, we finished second steps on the playground on a relatively pretty day. Ms. Mathur’s class needed to paint the coral reef.




Mr. Werner’s class needed to paint an ocean of paper blue and the paper currency waves.



Ms. Stephens’s class needed to draw pictures about their different focus areas. 

The playground is a great place for making new friends.  Many children came over while we were painting.   They were from other classes but they wanted to paint too.

I did not turn them away. They joined in the effort and freely gave their time and their joy of art and all of its possibilities.

I know recess is designed as a time to run and play.  It is a time to focus on health and freedom from the rigors of academia and memorization.  But when a child draws on the playground, the mind can run free as well.  These stolen hours in childhood accumulate over the years to ten thousand hours and mastery of the form.

So when the day comes that these children can use their skills to help others and change the world, they will be ready.  

A Hospice Card at HIMSS13

I talk about HIT (Health Information Technology) often.  I am very excited about the potential for HIT to allow patients better access to information so they can make decisions about their health.  I attend a lot of policy meetings on the subject of HIT and the subject of patient safety.  Those conversations are wide-reaching, but one topic that is rarely touched upon is end of life.

Like many people in our culture, policy folks often side step this conversation in favor of a safer topic like “disparity.”  We can have in depth discussions about the need for a reduction in hospital readmission, but not address the panic readmit of a hospice patient when the family is ill prepared for the final days.  I can watch a room full of people hash through clause after clause on Meaningful Use regulations and see them barely touch upon transmission of advance directives.

So, I am bringing a large hospice card to HIMSS13.

HIMSS 2013 Annual Conference andExhibition is March 3-7, 2013 at Ernest N. Morial Convention Center, New Orleans. The HIMSS (Healthcare Information and Management System Society) conference focuses on Health information Technology and Informatics.  The conference is the largest in the field of HIT and 40,000 attendees are expected. 

I will be attending and painting on site on March 5th. I will be in a special session:

 

“PatientExperience through HIT Forum” location: Room 252

Is e-engaging with your patients worth the effort? This one-day forum features three sessions dedicated to the value of enhancing the patient experience.

Making Patients Your Partners in Satisfying Meaningful Use Stage 2 Objectives: Case Studies in Patient Engagement

March 5, 2013 
9:45 AM - 10:45 AM

Description:

Speaker(s):

§  Eric Manley

§  Simeon Schwartz, MD

§  David Rowe

The Business Case for Implementing a Patient-Centered Communication Strategies
1:00 PM - 2:00 PM

Description:

Speaker(s):

§  Jonathan S Wald, MD, MPH

§  Dave Chase

 

Building Patient 2.0: Engaging People in Health through Consumer-Facing Devices and Tools
2:15 PM - 3:15 PM

§  Sandra Elliott

§  Christine Robins

§  Jane S. Sarasohn-Kahn

I am really excited to paint these sessions as I know several of these speakers and they have amazing things to say about the intersection of patients and health information technology.  I am happy that Meaningful Use does require that 50% of the time hospitals/doctors find out whether a patient has an advance directive, but I wish it were for 18 and older not just 65 and older.

Many folks at this event will be talking about the power of patient reported data and its importance in a vibrant electronic health record.  But I bet most of those folks will be thinking about data submissions as information from scales and blood pressure cuffs with wifi rather than wondering if their local HIE (health information exchange) can connect with a personal account on MyDirectives.

If you come to the session please sign the hospice card.  I plan to send it to Hallmark via a few of my Kansas City friends as an example of our support of an End-depth discussion on policies that affect us all.  

If you do not make to the Patient Experience through HIT Forum, there will be a post session tweet-up on Patient Engagement at 3:30 at the HIMSS Social Media Center.  I hope to see you there.

On Mirrors: The Continuing Conversation on Hospice Cards

I want you to think of how many times a day you look within a mirror. 

Every time we enter the restroom we glance within the mirror to double check our appearance. We use it to take those lovely cell phone pictures that create avatars on countless social media sites.   We stride upon the streets of a city and reflected upon endless windowpanes; a dark copy of our face walks beside us marking time. 

A conference planner once asked me how could we make the assembly space of a symposium remind every attendee how it feels to be a bedridden patient.  I responded that is easy. 

“Cover every hall and bathroom mirror with black paper.”

The planer looked at me quizzically and waited for my explanation.  “The very compromised patient is stuck in his or her bed. Most hospital bedside tray tables do not have a mirror, or if they do it is often broken.  So you spend a lot of time alone without even the comforting gaze of your own eyes.”

I remembered this conversation in relation to a comment the Hallmark spokeswoman Linda Odell gave to Kansas City reporter Elana Gordon in her article "Addressing Death and Dying…Through a Greeting Card?”  This response was related to the petition Hallmark: Create Hospice Cards.

“Odell says she also recognizes that each person’s experience is different.  “Bless her [Holliday’s] heart for leading the way,” says Odell.  But she adds that Hallmark reflects what people are talking about, rather than “picking up the flag and leading the charge.”

“We’re always listening, but we’re listening to a lot of people. We’re talking to a lot of people…and we are always paying attention,” says Odell. “As people are more open about talking about things, yes we reflect what they’re talking about. But we’re a mirror of that…There are isolated data points and we certainly take that into consideration.”

So Hallmark is calling itself a mirror and does not see a reflected need for hospice cards.  I do not find it surprising that the viewpoint of the dying is not well reflected within our society. 

After all we do not give them mirrors.

We give them washed out cotton gowns, institutional surroundings, numbers instead of names, windows that do not open, diapers and silence. 

But we could change that.  We could change it by talking to the dying and sharing their worldview.  We could change it by taking small steps that turn the tide of culture.  If Hallmark created hospice cards and placed them in stores, that would be an amazing step on the journey to better care of everyone at end of life. 

Hallmark you can be a mirror, but I ask you to be a signal mirror.  You should send a message, a beam of light that can be seen miles away; a message that can be opened and read by someone who needs it.

Read by someone in a room without mirrors.

Please Sign the Petition Hallmark Create Hospice Cards

What I learned on the road to the Shorty’s

January 26^th was my son Isaac’s 7^th birthday. Our small apartment filled with laughter as we crammed 7 children and 12 adults into our living room.  It was a great day and I always enjoy such moments because they unite every aspect of our lives.  Friends from Isaac’s old pre-school were there, as well elementary school friends, friends from the toy store Child’s Play, my husband Fred’s co-worker from years ago, patient advocates, neighbors and family.

During this crazy fun-filled day I got a tweet from LisaFields. 

She suggested voting for me in the #activism category of the shorty awards.  (The Shorty Awards are like the Oscars in Social Media.) Now, what Lisa did not know was I was working on a really huge painting for Alex Drane. I was painting my interpretation of the spirit of the Eliza Corporation.  So, for the next 10 days I somewhat ignored her nomination. 

I finally (mostly) finished the Eliza painting and received a request from The Hilgos Foundation focused on the arts within patient populations coping with dementia.  They were competing in the #charity category of the Shorty Awards.  I love their program, so I voted for them immediately.  Then I guiltily remembered Lisa’s nomination. 

So, I filled out my profile page and began the incredibly hard steps of a twitter campaign.

I have learned so much from experiences like this one.  My friend Ted Eytan has suggested I stretch my wings and try my hand at challenges several times.  He suggested I compete in the Sunlight Foundation Community Health Data Initiative in the spring of 2010.  I entered a painting focused on comparing hospitals into a competition filled with apps or website design. I lost; well I got an honorable mention… but in the traditional sense I lost.

But what did I win?  I learned a great deal about HospitalCompare.gov before it existed. I learned about HCAHPS scores before folks we even talking about Value Based Purchasing. Roni Zeiger wore an “Art Jacket” on stage before there was a gallery.

I think that is a win!

In the fall of 2010, Ted also introduced me to the Ashoka Changemaker Competition and I entered 73 Cents and the concept of painting about data and patient rights on walls.  Once again I lost.  But what did I learn?  I learned about so many amazing activists around the world and the great projects they were working on.  I supported others on their journey. 

I think that is a win!

Next Ted told me to enter “Body Shock the Future” from the Institute for the Future.  I entered a painting focused on the unhygienic use of the patient bedside tray table as both a changing table and feeding tray.  It is also one of my favorite paintings because I captured my late husband’s expression perfectly.  Once again I lost.  But I learned how to campaign more effectively this time.  The painting did get shown to a wider audience and a couple of years later  I would meet the designer Michael Graves at TedMed; I talked with him about it.

I think that is a win!

So last fall when I decided to crowd-fund the Partnershipwith Patients Summit in Kansas City, I had plenty of practice doing an online campaign.  We would need to raise 20k to barely break even.  If I failed at this campaign, I would let down so many patients, not to mention my friends at Cerner who put trust in me.  I would do two different campaigns simultaneously one at Medstartr and one at Healthtechhatch.

This time we won.  We made our goal!  Partnership with Patients happened.

I think that is a win!

Lisa Fields nominated me on January 26 for the Shorty Award in #activism.  I have been campaigning diligently on twitter since February 5^th.  I currently have 378 votes and need about 100 more to finish in the top 6.  Those in the top six will be judged to decide the winner.  Based on the high level of difficulty getting just 378 votes in 11 days, I think it improbable that I will finish in the top six.

I probably will fail in my attempt in the #activism category for the Shorty Awards.

But what did I win? 

I was on twitter often enough that I engaged in far more chats than I normally do.  So I was there to support Lisa Fields when she hosted the @TedMed chat #GreatChallenges on end of life. I joined the conversation and mentioned the concept that Hallmark needed to create hospice cards.  I have been suggesting this idea for almost a year on my blog and to Hallmark directly through customer service.  I think it would help normalize conversations with those who are dying.  But the #greatchallenges conversation was so inspiring; I built a petition on change.org immediately.  Members of the tweet chat began signing it, and now I had two campaigns underway!

Now, some folks would think twice about taking on another campaign in the midst a current one.  Some folks would wonder, “How will this make me look?  Will people think I am doing this for added exposure?”  I admit I paused for a couple minutes with precisely that worry.  And I was not wrong, as I was accused on twitter days later of exactly that motive.

So I want to make something very clear. 

Everything I do is to improve the patient experience.

The Walking Gallery, conference painting, speaking, live-tweeting, blogging, entering competitions like this one, all these things I do so we can spread our vision of truly participatory medicine in which patients will not have to suffer.  In so doing I have met amazing people who would do just the same, like Ted and Lisa.  When I am offered an opportunity that could grow our network of friends, I say yes.  I call these moments “God moments.”   Sometimes when opportunity or providence knocks it does so in the guise of a tweet.

As these dual campaigns continued the web of friends spread, until Miriam Cutelis a fellow parent posted a notice about our work in advocacy in my son’s elementary school online forum.  She encouraged parents to sign the petition for Hallmark to createHospice Cards, take the Partnership With Patients Survey and to vote for me for the Shorty Award.  Soon I was greeting local parents on my twitter feed.  I love it when worlds collide!

In November, I delivered a speech with Ted.  It was entitled Bouncing a ball alone: Grokking Failure. We presented it at TEDx Detroit.  It was a very unorthodox speech.

We literally bounced a ball onstage :) and spoke of things often not spoken of.

Ted was willing to stand on stage with me, fail or win in the name of better communication for all.

We were embracing failure.

I want to thank everyone who voted for me in The Shorty Award competition for Activism.   I know it might have been a bit uncomfortable logging in and voting.  I appreciate all you have done.

(Oh, in case you wondered it is bowtie shaped on purpose, because bowties are cool.)

Even if I fail, we win.  Go Patients!!!

###############################UPDATE##########################################

In the final hours Ted Eytan suggested tweeting nominations in a new way:

'I nominate @ReginaHolliday for a Shorty Award in #art #activismcategory because her work creates a healthier, more caring society."

And the race is on...

Hallmark is listening

Today has been an amazing day. The petition for Hallmark to create hospice cards has now grown past 1,500 signatures.

Hallmark has responded in two ways.  The Hallmark search engine now recognizes the word  “hospice” and the phrase “end of life.”  It will now send you to a card match that is as close as they could find to address the need.

They have also released a statement entitled:  “Viewpoints: Greeting Cards for People in Hospice Care.“ Screen shot below:

I wish to applaud these two steps in the right direction, but I want you to look closely at the first card they selected to address this issue;

“Cancer is tough, but you are tougher.”

This is the last thing a hospice patient with cancer wants to hear.  To often they have been told that this is a fight, cancer is a battle.  What is hospice? Losing? 

There are other lovely cards depicted in the statement, the “caring thoughts” are nice but I don’t think the last image of  “I hope you are taking care of yourself” is the best choice.   That makes it sound as though the patient could do something to rectify his/her situation if they just took better care.

We need Hallmark to take this issue of communication at end of life and hospice head on as they have for numerous topics like miscarriage as seen in this below screenshot.  This kind of clear messaging gives us permission to talk about life and death.

Hallmark also says they are rolling out a “tough times” selection of cards, but we need a clearer choice that that.  We need to see a “hospice” header right beside the “get well” and “thinking of you.”

We need HOSPICE cards.

Please sign the petition: Hallmark: Create Hospice Cards 

*********************************************************************************

Update:  One comment suggested we should offer some wording for Hallmark.  I welcome your suggestions in the comments here or on the petition itself.

What would I suggest?  First more than text some folks look at the picture.  I would love to see more faces and people on cards.  Pictures often say things we cannot says with words alone.



But what words for this?  No one said that would be easy...

There has never been a moment I loved you more,
than this moment,
in this time,
I wish we could finish this race together.
I wish I could take the baton from you,
I wish I could finish the relay in your place,

You have always been the light within my life,
and now that night is coming

Know that I will always love you.

2-24-13
Here are some ideas from @BeHereThen http://beherethen.wordpress.com/2013/02/24/end-of-life-issues-and-hospice-cards/ she gives them to folks who want to ideas of what they can say.