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.

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, 1^st 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 1^st grade project “Flower Vase.”

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

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

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

Mrs. Wampler 4th grade class project “The Four Seasons.”

                                     “Birches and Butterflies” from Mrs. Paul’s 4^th grade class.

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

                                     “Birds on a Highline” from Mrs. Stark’s 5^th 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!

The Business of Art

People often tell me that for an artist, I have a good understanding of business.  I would hope so!  I started working at the flea market in Sapulpa, Oklahoma at the age of seven.  I was paid two dollars a week under the table for my labors. I got first real job at the age of 15 as a teacher’s aid and part time art teacher at a summer school program.  The Private Industry Training Council of Sapulpa teamed local businesses with disadvantaged youths and helped pay part of our salaries.  So I owe my first job, and it was a job in the arts, to the willingness of businesses to work together to help the children of a small town get a chance to shine.

I am very happy to say that I have been able to pay that gift forward.

I now live in Grantsville, Maryland and I asked several businesses in Grantsville if they would be willing to take part in an inaugural Art Walk.  Fifteen businesses said, “Yes!” They are hosting guest adult artists and the work of local students.  The art was on display during business hours from November 13- December 11. At the close of the Grantsville Art Walk, an art reception and silent auction will be held 5-7pm on December 11 at Penn Alps Restaurant in Grantsville.  It will be open to the public. The funds raised by silent auction will go to the various charities chosen by the artists.

Green Valley Foods hosted Watercolorist Connie Stark. The funds raised from the auction of Connie’s piece “Amish Farm” will go to Hart for Animals of Garrett County.

BlueMoon Antiques hosted two jewelry artists: Jenny Knauff who is donating the proceeds from auctioning her jewelry to the Juvenile Diabetes Foundation and Lisa Rounds who is donating her proceeds to The Ruth Enlow Library. (Pictured with art Margaret from Blue Moon Antiques)

Photographer Marcia Warnick’s work was displayed at 1^st United Bank. “The White Dogwoods” proceeds are being donated to Samantha Funding the Arts. (pictured with art Blake from 1st United Bank)

The woodworking of Butch Buckel was displayed at the Ruth Enlow Library. Butch is donating the proceeds from his creation to the Grantsville Elementary PTO (Parent Teacher Organization).

TheHighland Thrift Shop hosted Photographer Phil Sorensen. 

Phil is donating two pieces to auction: “Garret County Barn” and “Sunburst” all proceeds will go to Garrett County Mentors.

MedicalRehabilitation Systems hosted the painted textile work of Regina Holliday and Joan Holliday.  As the work we are showing represents the advocacy movement known as The Walking Gallery, we are donating a materials basket with information about the movement. The proceeds from this basket will go to the Grantsville Elementary PTO.

Somerset Trust displayed the paintings of Carolyn Collen DuBose. She is donating “The Barn in Sheperdstown.” Carolyn was the art teacher at Grantsville Elementary and taught elelmentary art of 31 years. Her proceeds will also go to the Granstville Elementary PTO.

The work of Photographer Connie Garlitz was displayed at The Republican Newspaper office. “Flower with Hummingbirds” is the piece Connie is donating to support the Rotary Christmas Tree Fund.

The students of Grantsville Elementary are participating by displaying class creations in local businesses.  All proceeds of the children’s work will go to the Grantsville Elementary PTO to support continued education in the arts. 

The student work from Mrs. Wampler class “The Four Seasons” was displayed at Buckel’s Laundromat.

TheMedicine Shoppe displayed “Birches and Butterflies” from Mrs. Paul’s 4^th grade class.

Four Season’s Stichery displayed “Paper Quilt” by Mrs. Upole’s 5^th grade class.  

Dr.Robin Bissell’s office displayed “Birds on a High-line” from Mrs. Stark’s 5^th grade class.

Grant’s Mercantile displayed Mrs. Pfaff’s 1^st grade project “Flower Vase” and Mrs. Frantz’s 3^rd grade project “A Field of Flowers.”

Penn Alps displayed the painting “The Casselman Bridge” created by Mrs. Rhoten’s 2^nd grade class.

Kid’sCorner displayed the work of Mrs. Evan’s preschool class with a pice entitled “Fish” and the work of Mrs. Bittinger’s Class.  Their piece is entitled “Kites Fly High.”

The Republican Newspaper’s Grantsville office also hosted the work of Mrs. McKenzie’s 3^rd grade class and their painting of “Grantsville.” 

. 

Rolling the Dice

I paint the patient story.  Many people know that.  Others who closely follow my work know that my focus in advocacy is patient data access and the patient/caregiver role in the implementation and use of HIT (Health Information Technology).

Last March, I was honored to do and interview with the elusive Tim from HIStalk about the current landscape in HIT. Tim is known only through his avatar and his writing. I met Lorre Wisham during the process of conducting the interview.  She is the public face of HIStalk. She attends conferences and oversees the day-to-day operations of HIStalk as the Chief Operating Officer.  She also has an avatar and that avatar is lovely.  The image is based upon her real face.  She almost seems like a Disney princess, the image in the looking glass, the fairest of the land. 

Lorre asked if she could join us in The Walking Gallery.  I read her story of pain and cried.  This is her jacket painting “Rolling the Dice.”  Here we see the other side: the mirror’s flipped reflection. Here the princess cries for all that are lost.

Lorre’s oldest daughter Danielle was a type 1 diabetic.  She was diagnosed at the age of 12.  She was a frequent visitor to emergency rooms and pediatric ICU for years. The smallest infection, like an ingrown toenail could upset her blood sugar.  The doctors and nurses seemed to be rolling the dice when it came to treatment options. Many times Lorre’s daughter was in the hospital, finally stable, and they would bring her lunch.  Lorre would tell the nurse that her daughter needed insulin if she was going to eat.  The nurse would look at Lorre with a withering glare and the nurse would say that she knew better. Unfortunately, she did not. Lorre’s daughter would say, “Mom, I think my blood sugar is high.” She was right.  Lorre had to covertly bring insulin with her to the hospital and administer it against medical advice.

Once Danielle’s blood sugar was frighteningly off. Lorre took her to the emergency department at the local hospital.  They stabilized her overnight. Lorre sat with her daughter and held her hand.  The next morning the hospital decided to transfer her to the Pediatric ICU at a nearby facility.  They removed her IV. Lorre and Danielle waited an hour for the ambulance to arrive.  Lorre asked about insulin but was told they could not administer insulin in an ambulance without a nurse present. Lorre’s prior experience with insulin was intrabolus and it lasted for hours, so she thought everything would be fine.  What Lorre didn’t realize was that when insulin is administered in an IV the effect is immediate, but ends immediately when the IV is removed.  

By the time they arrived at the second hospital and were able to admit her to the ICU, Danielle’s blood sugar was off of the charts again and she was in kytoacidosis.  They started the IV and added insulin.  She didn’t respond.  They ordered new insulin from the pharmacy.  By this time she lost consciousness, her blood gasses were off, and her brain started to swell.  There were three physicians there, including an endochroinologist.  They said they had done everything they could and she wasn’t responding.  They didn’t think she was going to make it.  She did survive that event and became conscious 12 hours later.

Lorre and Danielle were able to spend many lovely years together. If you look at Lorre’s facebook page you will see Lorre with her two daughters at Christmas time.  Sadly, Danielle died almost ten years ago in a car accident.  It was never determined if her blood sugar levels were a contributing factor.  

Lorre’s grandmother was hospitalized three years ago. When Lorre arrived at the facility her grandmother was in tears.  Lorre’s diabetic grandmother had been taking hydrocodone for pain every 4 hours at home.  She also took 16 other medications and carried a complete list in her purse.  She had arrived in the emergency department nine hours prior and still had not been given any insulin or pain medication.  Lorre and her husband both worked in Healthcare IT. They immediately went to the charge nurse and didn’t leave her side until Lorre’s grandmother received her medication.  When they talked with the nurse afterward, she admitted the emergency system and the hospital EMR (Electronic Medical Record) system weren’t integrated or interfaced.  The nurses on the floor had no way of knowing what occurred in the emergency department until the notes were entered much later.

Two years ago Lorre’s youngest daughter Brianne was in a skiing accident and ended up in the hospital in La Jolla, CA. She was diagnosed with pneumonia one month later.  Her lung was 70% filled with fluid and she wasn’t responding to the treatment.  Lorre kept telling the pulmonologist about the accident and he dismissed it.  Finally, Lorre asked Brianne to show the doctor a picture of herself purple from her neck to her buttocks and with a fractured collarbone. The doctor said, “Oh My God, there must be tissue damage.” Due to this patient reported data and accompanying image, the treatment plan changed.  Brianne was in inpatient care for 16 days and recovered.

While Brianne was in the hospital in La Jolla, Lorre’s husband learned he needed a liver biopsy in Tucson.  Lorre returned home. Her husband’s biopsy revealed liver disease.  They gave him a 50% chance of surviving for 30 days. Lorre thought of all of the reasons they could beat the odds.  They had good insurance, the ability to pay for additional attention, willingness to do whatever it takes and he was relatively young.  Lorre’s husband was admitted into the hospital on July 2, 2012.  She was very shocked by how present she needed to be just to keep everyone involved in treatment on the same page.  There were teams of physicians, new nurses every couple of days, and a rotating group of aides.  The staff was consistently forgetting his medication or mixing it up.  Lorre had to be ever vigilant about what her husband needed, but also what they were doing or failing to do. 

The physicians ordered so many tests. Lorre believed that if they did everything they were told to do, they would get through it.  Her husband contracted C-diff and hospital acquired pneumonia.  He started to suffer from anxiety and became terrified at night.  Lorre slept at the hospital and only left to shower and change clothes.  They were in the hospital for 16 days straight, when a brave nurse took Lorre aside and told her she was fighting a lost battle.  The nurse told Lorre one more hospital-acquired disease would be more than her husband could stand. He was dying. Lorre took him home and he died two days later.

On July 3, 2013 Lorre’s father was diagnosed with stage 4-pancreatic cancer.  He also lived in Tucson. Lorre took responsibility for him.  Each time he was hospitalized (always at the same hospital using and electronic medical record system), Lorre had to go through the medication list several times until they could agree that it was correct. Regardless, many, many times Lorre received a call at 6am from the hospital pharmacy asking her to clarify the orders or provide them in their entirety.  It was maddening to think that all of his information was in the system and literally a week after the prior visit they had to start from the beginning again.  Lorre’s father died in November 2013.

That is Lorre’s story of pain. I placed dice throughout this piece. A single die is placed next to everyone Lorre lost.  Each die is either pressing Lorre down or separating her from the one she loves.

I am sure that everyone who reads this can empathize with Lorre’s pain, but for those of us who work in technology and love the science behind evidence based medicine; the frustration in this tale is acute.  Though life itself can be a gamble, the protocol in medical care should never be a roll of the dice.  

The Walking Gallery Center for Arts and Healing

When I was a young girl I struggled to read.  In fourth grade I had a teacher that helped me beyond measure.  She taught me how to read well.  She cast me in the play Oklahoma.  She encouraged me to write and draw.  By 5^th grade I was reading chapter books all by myself.   My favorite books were all of the Little House books, A Little Princess, Pollyanna and Heidi.

The pint-sized heroines inspired me with their ability to overcome adversity.  I loved the idea of imagining and then creating a beautiful world within a cold dark attic.  I could envision a rainbow of color hidden in chandelier glass and play the game of always thinking of something to be glad about.  I could understand the allure of returning to healthy mountain air over the coal dust vapors of a Victorian city.

I have never forgotten these lessons of my youth.  I know the power of hope and friendship can heal so many wounds of the spirit.  Now I am an adult with a responsibility to spread goodness in a world that is often filled with sorrow.

I live in a small town teaming with young children and adults yearning to create. They want to draw and dance and paint, but in the winter opportunities to do such things are few and far between.

I work with patient advocates and medical providers from around the nation who cry out to me.  They tell me their sorrow and I paint it on their back; but sometimes they need more.  Sometimes they need a place to rest and reignite their fiery passion.  

I created a movement called The Walking Gallery and I need others who will paint with me and help to spread the patient voice. We need the space and time to turn hundreds of jackets into thousands.

So I ask you to help me build a vision into a reality.

In the healthy mountain air of Grantsville, Maryland I want to create The Walking Gallery Center for Arts and Healing.  There are rooms that will be galleries and rooms that will fill with laughter and dance.  There are bedrooms that will refresh the weary patient and inspire the striving artist.

All this will come to be if we work together and turn a vision into reality.  

We have 40 days to raise enough money to begin the process of securing this building.  I think we can do it, but not without your help.  Cancer 101 has agreed once again to act as our grant partner in this crowdfund, so all donations will be tax deductible. 

To quote the words of Pollyanna, “It’ll be just lovely for you to play…It’ll be so hard.  And there’s so much more fun when it is hard.”  

Thank You,

Regina Holliday

#Cinderblocks2: The Partnership with Patients Continues

In September of 2012 we had our first gathering of  #Cinderblocks or The Partnership with Patients summit in Kansas City, Missouri.  There were about 70 in attendance and everyone left filled with the passion that changes hearts and minds.  Sarah Barr wrote about the event for Kaiser Health News. In the two years since, people has asked repeatedly about when do we plan to meet again.  Well, I tell you the time has come to spread the word of our next gathering.

#Cinderblocks2: The Partnership with Patients Continues will be held June 4-6, 2015 in Grantsville, MD.  

This conference will be held in the scenic beauty of the mountains of Western Maryland.  This will be a destination event and the spirit of the conference will be sort of like Burning Man meets healthcare.

Now some of you may not remember why I use the hashtag #Cinderblocks, so I thought a refresher might be in order... 

"When I was a child I went to an elementary school that had few resources.  In fifth grade, someone donated a large amount of books to our class.  We were very pleased to have them, but we had no bookshelves on which to place them.  My teacher was very enterprising though, and she contacted the local lumberyard and requested they donate some two by fours and cinderblocks so we could make shelves.  The lumberyard manger said yes, with one caveat, we would have to pick up the supplies.

That year our fifth grade class had a field trip.  

We left the school as a class with our strong backs and eager minds. We walked to the lumberyard.  Some of us grabbed the two by fours, some of us cinderblocks and some us combined the two to make a carry yoke for two students to heft.   We walked those blocks all the way back to school and up three flights of stairs.  Then we assembled those shelves and placed the books upon them.  We stood back and looked proudly at our work.  I cannot believe there was a class anywhere else in the entire nation who cherished their bookshelves as much as we did ours.

We loved those shelves because we overcame adversity and made that which we needed.  It wasn't pretty, it wasn’t perfect, but it was ours."

So the really cool thing about this event is that it isn't in the grand ballroom of a four star hotel.  It may not be perfect, but it is ours.

You can register to attend here:

How will you get to Grantsville, MD?

By Car:

The location is about 1 ½ hours by car from Pittsburg or 2 ½ hours from DC/Baltimore.

By Train:

The Amtrak train from DC has a daily stop in nearby Cumberland, which is about 20 minutes away.

By Party Bus!!!:

On June 3, 2015 the Health Data Palooza 2015 in Washington DC will finish. We have a charter bus that can pick up 55 people from that event and bring them to Cinderblocks2. The bus will take them back to DC on the afternoon of June 6^th.

Who will be there?

We expect to see a very diverse crowd at this event. There will be people who work in the government, healthcare, crowdfunding and technology.  We expect to see patients, patient advocates, activists and caregivers.  Artists, performers and dancers will be attending as well as local individuals very interested in the intersection of art, policy and health.

What is the agenda?

 For any folks who arrive on the evening of June 3^rd we will have a potluck or cook out depending upon available venues.  You are welcome socialize or to rest depending upon your personal needs.

Conference Day 1

On June 4^th we will meet at 8:00 am at Penn Alps Restaurant and Meeting Center for breakfast and our general session.  Then we will do breakout sessions until lunch.  The afternoon will also be filled with breakout sessions. The formal sessions will end at 4:00pm. Feel free to explore.

6 pm * Dinner location to be announced.

The Walking Gallery Gathers

At 7:00 pm we will gather in front of the old elementary school 116 Main Street for a group shot of The Walking Gallery and the conference attendees.   We will walk from there across the historic Casselman Bridge to the Arts Field by Spruce Artisan Village.   There we will have our evening event under the big; this portion of the conference event open to the public and does not require tickets.  This will be the 4^th large gathering of The Walking Gallery of Healthcare.  In this space we will get to hear people tell their powerful stories. We will get to hear singers and musicians who are doctors and informatics professionals and choirs that sing on the Threshold of the dying.  In honor of the Cinderblock itself, we will watch those that dance with fire. 

We will embrace the spark within ourselves and remember those we lost as we endeavor to make this world a better place.       

Conference Day 2

On June 5^th   another conference day begins!  At 8:00 am meet at Penn Alps Restaurant and Meeting Center for breakfast and our general session.  Then we will do breakout sessions until lunch.  Lunch will be served at noon-1:00. The afternoon will also be filled with breakout sessions. The formal sessions will end at 4:00pm. Feel free once again to explore.

6pm *Dinner and evening event to be announced

Conference Day 3

June 6^th at 8:00 am meet at Penn Alps Restaurant and Meeting Center for breakfast and our general session.  This day we will break into small groups to work on mentoring and individual coaching sessions.  General Conference close at noon.  The party Bus will be in the Penn Alps parking lot at 1:00pm to drive back to DC.

Where do we stay?

Meshach Browning's Cabins on the River.  These cabins are right next to Penn Alps and come in variety of styles and sizes that allow for 2-6 guests.    

The Casselman Inn This hotel is in the heart of town and in walking distance to most of our activities.  It is a historic drover's hotel and has more space in a motel addition.   

The Comfort Inn This hotel is right off 68 and is about three minutes away from town center by car.

Please let Regina Holliday know if you would rather be placed with a local host family. 

(If The Walking Gallery Center for Arts and Healing is fully funded by June there will be rooms there as well. )

So mark your calendars and register! I hope to see you there!!!!