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Saturday, February 14, 2015

Sending the Card

Today is Valentine’s Day. 

As a child, I rather dreaded this day as would have to laboriously write 30 names of my fellow students on their cards.  I did however cherish the cards I received in return and still have some from 1983 in my memory box.   Cards can make you feel so very wanted and loved.

As I worked this year with my son Isaac on his Valentine’s cards for his third grade classmates, we discussed the many ways he could show his friends that he cared for them.  We also began a rather deep conversation about subtext.  We talked about the facing message that is obvious in a card but there is often a deeper subtle message underneath.

In February of 2013, I began a campaign on Change.org and on Twitter to encourage Hallmark to have a line of hospice cards.  The idea came out of a tweet chat that TedMed hosted that year.   Major media sites reported the campaign that spring.  Hallmark did consider my proposal and made their search engine a bit more user friendly for families looking for cards appropriate for hospice, but they did not create a hospice card.  A competitor, Greeting Card Universe, ended up making 24 different types of hospice cards in the spring of 2013.


When I attended HIMSS in Louisiana in March 2013, I brought materials to begin creating a large hospice card prototype for Hallmark.  So many people who attended the Patient Engagement Track signed the inset that would accompany the card. 








When The Walking Gallery gathered on June 2, 2013 in Washington, DC attendees from all over the nation signed the card insert we planed to give to Hallmark.

When I spoke at KUMC in Kansas City, Kansas in September 2013, I brought the card elements with me.  With help from the amazing folks at KUMC we assembled the card right there in Kansas only miles away from Hallmark Headquarters. 




My dear friend Jari Holland Buck, Walking Gallery Member and patient advocate took the over-sized card to the Hallmark Headquarters in September 2014.  We had tried to arrange an official hand-off in 2013 but were unsuccessful.



 At approximately 11:30 am Central time, September 5, 2014, Jari delivered the hospice card we assembled at KU Medical Center. Jari did try to find the “right” person to accept delivery of the card to no avail.  She hoped a spontaneous visit would net results.

Prior to arriving, Jari verified that they still lacked an identified presence in the hospice cards. Their website stated the following, "These cards are available within several different lines in any store that carries Hallmark products.  But because they haven't typically been displayed together, and because not every store offering Hallmark products carries every card we produce, these cards can be difficult to find. Late last year we began offering new displays to group these cards in a "tough times" zone with signs to help shoppers find them.  These new sections will be appearing in many Hallmark Gold Crown stores throughout 2013."

The front desk security guard asked Jari to leave the card as she was making an “unscheduled delivery.” Jari refused, saying that there was too much pain and too many people behind this gesture to simply pass this work to Hallmark anonymously.



 Jari suggested several possible recipients to the security guard. The security guard responded that she didn’t have the names or roles of department employees. Jari suggested that Media Relations might be a good direction.

Linda Odell, (whom responded to my initial request via several reporters in 2013) Manager of Media Relations, personally accepted delivery of the card.

This is what Jari told Ms. Odell:

“My name is Jari Holland Buck. I am a Patient Advocate and member of Regina Holliday’s Walking Gallery. I am here today on behalf of all hospice patients, past, present and future, as well as the family members who care about and the caregivers who care for them. Facing death is one of the most difficult challenges any of us will face, whether it is ours or that of someone else.

Hallmark has helped us with our inability to express the right message and continues to do so by offering cards that are “appropriate” for those in hospice. When I walk into a Hallmark store to purchase a hospice card, this is not a fun trip. I do not wish to search through the racks or be escorted by an employee who may or may not know where to source the appropriate card on the racks. This is hard enough for me to acknowledge and I just want to get in and get out.  Hallmark has neither clustered these cards in a meaningful way in the stores nor offered a line specifically dedicated to this painful experience.

On behalf of Regina Holliday, members of the Patient Advocacy Walking Gallery, our local community and caregivers throughout the US, please accept “our” card asking you to dedicate your time and attention to this issue.”




Ms. Odell responded that she was working on correspondence with www.caringbridge.org/ for a co-branded line of cards.  She was working on this at the very moment she was contacted by the security guard and thought the timing was fortuitous. Jari asked if Ms. Odell if she was aware of my petition and she said, “Yes. Regina was the one who initiated the change.org petition for hospice cards.”

Ms. Odell stated that hospice cards were still not grouped within Hallmark stores and was aware that there had been “issues” with shelf talkers / inserts that identified their presence within the racks.

Jari told Ms. Odell that she was serving as an advocate for a hospice patient. Jari knew, from personal experience, what it was like to visit a Hallmark store seeking these cards. Jari explained how awkward many of her client’s friends and family members felt expressing themselves to the dying patient.

Ms. Odell acknowledged that the point “This is not a happy trip to the card store and I am not here to shop or laugh,” was a valid one and one not previously considered to her knowledge.

She also said she knew 15 people who needed to see the card. They were spread widely throughout the organization. Ms. Odell then asked for a copy of Jari’s explanation of the card, which Jari willingly provided.

Today is Valentine’s Day and Jari sent me a card.  I don’t get many cards on Valentines day and I thank Jari for being such a great friend.  Her card encouraged me to write this post today and report on the Hospice Card saga of the past 2 years.

Which encouraged me to think about subtext.

I realized that I began demanding cards for our loved ones who are dying in February the month of Valentine’s Day.


I am a Widow. This is a hard month for me.  My thoughts turn to love and loss.  My request to Hallmark is that same as it was two years ago.  Help make a time that is so very sad be filled with love.  I don’t want a memory box just filled with Valentines.  I want to see some hospice cards.

So I write this post today and will tag it with #HealthPolicyValentines.  

Be the change you wish to see.  Never forget you can change health policy with a simple greeting card. 

Saturday, February 7, 2015

Flying


This is February.  In a few days from now thousands of people will flock to New York for Toy Fair 2015.  These are the people who spend their year focused on the wants and needs of children.  There will be the store buyers who will look for new the toys that will make a child squeal with glee.  The manufacturers and the designers will listen closely to the buyers and think of the ways they will redesign in 2016.  Marketers will spend countless hours focused on informing Mommy bloggers about all the wonderful items that will educate and inspire the future generation.  In the bright and whirling cacophony of commerce, design and creation everyone will focus on the child.

While all of this transpires, I will take off my artist smock and for day go back to Barstons Child’s Play, the store I have worked in for over 16 years.  I will be a clerk again.  I will focus on children and joy.  I will help parents make the best choices for their little ones.  I will fly away from the sickness and sorrow that informs so much of my work, and I will be the one who helps a child.

Then March will come.  Thousands of people will flock to Austin, Texas for SXSW2015 (South by Southwest).  These are the people that spend their year focused on film, music and cutting edge technology.  There will be the storeowners looking for an edgy sound or the newest digital design.  There will be the venture capitalists and angel investors looking for the hot new medical device or mobile tech concept.  There will be marketers and entertainment bloggers looking for the hottest new act.  In this pulsing musical clamor of the arts and tech combined, very few people will focus on the child.

Within the sprawling venue there are three tracks: Film, Music and Interactive.  Within the Interactive track is an expo focused on health and innovation.  Within the expo there is a microcosm called Impact Pediatric:  HealthPitch Competition.

Here they will focus on the child and for them I created the painting “Flying”



I took their logo, a spiraling series of foreshortened dots and turned them into shields.  Behind the shields pediatric patients are flying like superheroes.




In the far distance three children fly with symbols of a teardrop for mental anguish, a question for innovation and gears for power of industry.



Closer in a child flies with an exclamation point shield representing patient safety, another child has the symbol of a die for gamification and closer yet a child flies with the symbol of a ribbon that represents all disease.



Along the top of the spiral a girl holds a shield with the medical cross representing institutional medicine.  To her right a toddler boy holds a shield emblazoned with the universal symbol for the infant and it represents prematurity.  To his right a girl proudly bears a shield with a double helix for the potential of applied genomics.



At the bottom of the spiral and closet to the viewer are the last two children.  A boy holds a shield with the pound symbol, the hashtag, representing all things social media. To his left a determined girl flies toward the viewer and upon her shield is the wifi symbol representing the power of interactive tech to spread a culture of health.


On Monday March 16, the finalists will present their interactive concepts that could help pediatric populations.  I hope this painting will inspire them.  I am glad that Brian Lang from Impact Pediatric asked for my help on this project. I am so very happy to return to my first passion and once again help a child.

Friday, January 23, 2015

More Patient Travel Scholarships!

What does the “Cinderblocks2: The Partnership with PatientsContinues” conference (in Grantsville, MD pop. 825) and Doctors 2.0 & You conference (in Paris, France pop. 2 million) have in common?






Both events are focused on innovation and better communication within healthcare. 

Doctors 2.0 has the over arching goal of identifying the ways in which the inclusion of health 2.0 tools and social media platforms can improve care.

Cinderblocks2 is a mash up of art, activism, medicine, social media, HIT, patient rights and fire-dancing.  It is sort of like if Burning Man met healthcare.



Both events were founded and are organized by two powerful women:

As for Cinderblocks, I am Regina Holliday.  Sometimes called the Rosa Parks of Healthcare.  I graduated Sapulpa high school in Oklahoma. (GO Chieftains!) I worked retail for 16 years before my loving husband Fred died of cancer in 2009; then I became a patient rights activist and artist. I am a keynote speaker, a health information technology change agent and am currently creating The Walking Gallery Center for Arts and Healing in Grantsville, MD.   

Both events are on the same days!!!

Doctors 2.0 is on June 4-5, 2015.  Cinderblocks2 is on June 4-6,2015.  Now some conference planners would be shooting eye daggers at each other over that, not Denise and I.  We are all about spreading the love.

The most important thing both events have in common is that they will benefit from Patient Travel Scholarships issued by the Society for Participatory Medicine!

In 2012, The Society for Participatory Medicine created a patient travel fund so they could award ten $500.00 patient travel scholarships. These were issued to patients so they could afford to attend Cinderblocks1 in Kansas City.  We crowdfunded the money and we asked for direct donation to the site.  We were successful thanks to many kind donors.

When Denise pointed out that our events were on the same days she said it would be great if we could connect them in some way, so we decided we are going do some live streamed interviews between the two conferences. But why stop there?  I said that the Society for Participatory Medicine (#S4PM ) was going to provide patient travel scholarships once again for Cinderblocks, would she like to include Doctors 2.0 in the competition?  She said yes!  #S4PM said yes, they could issue awards for either event!!!

SO…. One day after I announce that HIStalk is epically cool and issuing travel scholarships for HIMSS,

I am announcing that the Society for Participatory Medicine will issue $500.00 Patient Travel Scholarships to attendees of Doctors 2.0 or #Cinderblocks2.

How do you enter?

You must post a blog entry by March 31, 2015 explaining why you want to go to either Doctors 2.0 or Cinderblocks2 and why a patient travel scholarship is needed. 

You must send a link to the post to me by either twitter or facebook prior to March 15, 2015.  If you do not have a blog, please send me your post as an attachment and I will find a blog you can post on as a guest blogger.  

You must also encourage people to donate to the travel fund. These scholarships will come from donations to the fund. I will do my best to encourage companies to sponsor folks but I have found when it comes to patients many small donations add up. (Below is just a screen shot you must go here to donate.) 



How will you be judged?

We will judge entries based on writing ability and need.  We will announce the winners on March 31, 2015.  Payments will be issued after the conference events.

Responsibilities of the winners: 

You will need to attend the conference of your choice.  We encourage you to use social media during the conference.  We will need you to post a report of your experience on a blog.  After these responsibilities are fulfilled, the Society for Participatory Medicine will issue the $500.00 scholarships.


It is sure a great time to be a patient activist! Spread the word and good luck!

Thursday, January 22, 2015

HIMSS or Bust

Last year I had the opportunity to do an amazing interview with Tim from HIStalk.  It was a wide-ranging discussion that covered a great deal of the HIT (health information technology) landscape.   Toward the end of our conversation, Tim and I began to talk about the challenges patients face attending HIMSS.  Many patients would like to go this enormous conference with its thousands of attendees, great educational sessions and access to numerous health care venders; but cannot afford to pay for hotel lodging, airfare and an attendee pass.  We talked about the possibility of working together to create patient travel scholarships.

So today we would like to jointly announce the HIS-talking Gallery Patient Scholarship for travel to HIMSS 2015, April 12-16, in Chicago!

There will be five scholarships offered for $1,000.00 each provided by HIStalk.  Each winning attendee will also have  a HIMSS attendee badge.  The winners will write a post about why they want to attend HIMSS prior to the event. That post will be hosted on HIStalk.  They will be encouraged to use social media to report out during the event. They will also write a HIStalk post explaining their experience after the event. As the founder of The Walking Gallery, I will offer to paint a jacket for any patient winners who have not already joined The Walking Gallery. The HIS-talking Gallery patient scholarship winners will be walking talking patient thought ambassadors in the hallowed halls of HIT.  Also they will be able to sit in the comfortable space of the HIStalk booth on the exhibition floor whenever they want to rest and recuperate.

In addition, they will also get an official T-shirt!

 How do you enter?

If you would like to be considered for one of these scholarships, please email your request to (one of our newest members of the Walking Gallery): Lorre Wisham at Lorre@Histalk.com.  Your email needs to explain why you should be funded to attend HIMSS and please include your facebook link or Twitter handle. (International patients are welcome to apply but they must be fluent in English and the scholarship amount is a flat $1000.00 regardless of travel distance.)

How is it judged?

The HIStalk team will judge requests based on writing merit and I will be looking at the patient story aspects.

When is it due?

All requests to attend must be turned in to Lorre by Feb 9, 2015.  We will announce the winners within one week on HIStalk.com.  Checks will be issued before the event so winners can book their airfare with these funds.



 Why are we doing this?

I see this scholarship as a wonderful next step in greater inclusion of patients within the HIMSS conference.  I thank Tim and the entire team at HIStalk for their willingness to support patient participation in such a meaningful way.

Now, start writing those emails!

Sunday, January 11, 2015

Butterflies

What shall I explain about this painting? Shall I tell you that Mélanie Péron lives in France?  Should I say that she met Nicolas in 1997 when she was only 19 and he was only 21?  Shall I tell you it was a perfect love that was full of happiness?  Their love completed her.  His loving glance filled her with exquisite flutters, like butterflies. 


After 10 years of happiness, something was wrong with Nicolas.  In 2007, he was diagnosed with acute myeloid leukemia type 6.  He must be cared for 125 miles from home in a sterile unit.  He had aggressive chemotherapy.  The search began for a bone marrow donor.  In 2010, they found a donor. Mélanie would watch Nicholas within his  sterile room.  She would don her protective gear and walk in like an astronaut; her heart beating like the wings of a butterfly.

After four weeks of isolated treatment, he was allowed to go home and recover.  His already thin frame was now gaunt.  He turned to Mélanie and said,” I look like death.”  Then sobs racked his body, as he cried as guileless as a child. Little by little he grew better.  In August of 2008, they went on holiday in the countryside.  In December 2008, Nicolas felt tired and out of breath.  He went to the doctor and was told he was just anxious.  He was prescribed sleeping pills, massage and exercise.

By New Year’s Day he was very short of breath, so they went to another doctor. Nicolas had a double lung embolism. They went to the hospital and soon Nicholas had a fever.  Mélanie met an awful nurse who visage is seared with in her mind.  The nurse did not want to disturb the doctor on duty.  Nicolas was in so much pain but struggled to get treatment because of all the drug interactions.  He contracted a fungus while hospitalized.  Then Nicolas told Mélanie he had planned to ask her to be his wife.

Nicholas was hospitalized from January until March. Mélanie wanted to do something nice for Nicolas so she contacted a French singer named Bénabar and asked if he could play for Nicolas.  The singer came to the hospital room surprising Nicolas.  This created a butterfly effect in the entire care team.  They saw the power of art in a clinical environment.

A few days later Nicolas caught a cold.  He had such trouble breathing.  They were so alone.  As anyone who has along term illness can tell you, as weeks become months friends fly away.  They live in their fast-paced normal lives, while in the land of the sick the moments are counted on a clock without hands.

The doctors tried a heroic measure of high doses of cortisone in a short amount of time. Mélanie did not leave Nicholas’ side as fought hallucinations.  She stayed night and day. He was as terrified as a small child and oh, so very sick.

On April 12, 2009 Nicolas died. Mélanie was shattered.  She never had the chance to be a wife, so she was not a widow.  She had no role in ceremonies of death, set aside; she would find a way to conquer grief.

She would embrace the butterfly effect.  She would help others who suffered.  She would write, she would promote the arts and she would create l’Effet Papillon.  In September 2011, she launched this social enterprise hosting writing workshops for 80 oncology patients. This project continues to grow. Mélanie continues to make new connections.



She found me.  She found another who lost their love to a dreaded disease in 2009.   She found someone who could paint her metamorphosis, someone who knew the beautiful pain.  We feel the wings of change as the flutter by.  We know the power of the last exhale.  We know breath can change the tide of years, we know the power of butterflies.

Wednesday, December 31, 2014

Can you tuck me in?

My boys are growing older.  My eldest is 16 and stands 6 feet tall.  He could easily pass for a grown man. My youngest is almost nine and each day I see glimmers of the man he will become. 

At night they ask for the same question, “Will you tuck me in?”  The nighttime rituals begin. I read them stories. I join them in their prayers. Before the light is extinguished, I unfurl blanket after blanket, tucking the edges close.  This is a moment to be cherished.  This is release of the day and the embrace of restful sleep.  This is a sacred moment and it relies on trust.

When you are an adult, you greet the night alone.  No loving parent tucks you in and wards you against the dark and all its terrors.  I can think of only a few times in an adult life you will feel billow of a blanket that descends upon you.


In a hospital, they tuck you in.  For a moment, you can feel as safe as a child.

Until they question your pain…
Are you drug seeking?

Until they insult your research…
Don’t tell me about what you found on Google.

Until they belittle your experience…
We do not have access to your entire medical record.


The hand that rocks the cradle rules the world.   The hands that tuck you in can make the difference in a life and in a death.   In 2015 lets work together, patient and provider, to restore a trust in each other and unite against the darkness.

Friday, December 19, 2014

The Grantsville Art Walk was a Success!



On December 11, 2014 the Grantsville Art Walk had a reception and silent auction at Penn Alps.  It was a lovely evening and the room was filled with friendship, culture and the giving feeling that abounds this time of year.

We set the minimum bid at 25.00 per piece. Many pieces sold well over their minimum bid and every single piece of art sold!  We raised over $800.00 for a selection of charitable causes.

We would like to thank all of the businesses that supported us during the month of the Art Walk by showing the work of the artists in their establishments.  Thank you Green Valley Foods, Blue Moon Antiques, 1st United Bank, Ruth Enlow Library, The Highland Thrift Shop, Medical Rehabilitation Systems, Somerset Trust, The Republican Newspaper, Buckel’s Laundromat, The Medicine Shoppe, Four Season’s Stitchery, Dr. Robin Bissell, Grant’s Mercantile and Kid’s Corner.  We especially want to thank the staff of Penn Alps for not only showing art for a month but for hosting a lovely reception.

The Children of Grantsville Elementary did their very best. Their work raised hundreds of dollars to support arts funding for their school.  Congratulations artists and teachers of Grantsville Elementary!


Mrs. Evan’s preschool class with a piece entitled “Fish”
Mrs. Bittinger’s Class with a piece entitled “Kites Fly High."


Mrs. Pfaff’s 1st grade project “Flower Vase.”

                              “The Casselman Bridge” created by Mrs. Rhoten’s 2nd grade class.




                               Mrs. Frantz's 3rd grade project “A Field of Flowers.”


McKenzie’s 3rd grade class and their painting of “Grantsville.”


Mrs. Wampler 4th grade class project “The Four Seasons.”
                                     “Birches and Butterflies” from Mrs. Paul’s 4th grade class.

“Paper Quilt” by Mrs. Upole’s 5th grade class. 

                                     “Birds on a Highline” from Mrs. Stark’s 5th grade class.

Thank you to all the artists who were willing to take part in this inaugural event!  I hope you return next year and it has been such an honor to get to know you better.  Thank you Phil Sorenson, Connie Stark, Carolyn Collen DuBose, Connie Garlitz, Joan Holliday, Marsha Warnick, Butch Buckel, Lisa Rounds and Jenny Beachy for participating as artists. 

(Pictured Connie Garlitz with her photography.)

(Pictured Lisa Rounds with her Jewelry)
(Pictured Marcia Warnick with her photography)

Thank you to my able assistant Susan Thatcher.  I am so glad you are part our lives!


Thank you everyone who came to the event. By purchasing art you donated funds to The Grantsville Parent Teacher Organization, Garrett County Mentors, Samantha Funds the Arts, The Rotary Christmas Tree Fund, Hart for Animals of Garret County, Juvenile Diabetes Foundation, and the Ruth Enlow Library.


Since the auction last week people have been glowing in their praise of the art and the event itself.  We cannot wait to do it again next year!