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Tuesday, December 31, 2013

2013: In the Rearview Mirror

Our Family

This was a great year.  On the home front, I began the home school process with eldest son Freddie.  Younger son Isaac continues to thrive in public school. He is now a proud 2nd grader.

We moved in June to Grantville, MD population 700.   This is the town my husband Fred called home throughout his childhood.  Often our older neighbors mistake my son Isaac for the child that was Fred.  Moving was a big change after living in DC for 16 years.  Grantsville is much calmer and a better home for my active sons.  Also, we now live in the same town as my in-laws and Fred’s grave is only blocks away. 

I now belong to the local Rotary Club and volunteer at the HighlandThrift Shop.  Isaac is in Cub Scouts and we are making new friends.  This area is awash with fundraising and good causes and I am honored to take part in such worthy endeavors.

Our Church

Our family joined Christ Lutheran Church in Grantsville this fall.  It is a lovely small Church with a dedicated congregation.   Pastor Ingrid and I went door-to-door twice inviting folks to our Church.  (I love people who are brave and go along with my evangelism ideas.  Pastor Ingrid is such a wonderful servant of the Lord and leader of our congregation.)   Two new families are now attending and have decided to be baptized in the faith.  I hope for them the joy I have felt walking with the Holy Spirit in my heart.

My Car

For the first time in my 41 years on this earth I have a driver’s license.   I took the driver’s test 4 times in the State of Maryland before I passed the test.  (I took it twice in Oklahoma in 1991, so that adds up to 6 times)  Some people in my life seem to think I am good at all I do.  This goes to show I am not. I just didn’t give up.  That is really important lesson in a life.

Thank you For the Opportunity to Speak

I look back on an amazing year filled with advocacy.  I spoke, painted and wrote about health in this nation and beyond its borders. I met so very many wonderful people and look forward to working with them again.

I had the honor to speak, paint, blog and tweet at so many wonderful places in 2013.  I thank all of the organizations and venues that gave me opportunity to spread the message of patient inclusion at the policy table and the importance of medical advocacy.  I especially thank Brenda Kane and her associates at the American Program Bureau for her diligent efforts to help me speak at ever more venues.

Thank you…

Saskatchewan Academic Health Sciences Network, Saskatoon, SK, Canada. 

4th Annual Workshop on Health IT and Economics (WHITE 2013) Washington,

“Patient at the Center of Clinical Trials.” Roundtable at Lilly, Indianapolis, Indiana

Midwest Care Alliance, Columbus, Ohio

MetaStar Event, Madison, Wisconsin

St. Joseph’s Hospital, Bangor, Maine

Planetree Annual Conference 2013, Montreal, Quebec, Canada

Annual Cerner Health Conference, Kansas City, Missouri

Health 2.0 San Francisco, California

Stanford Medicine X, Stanford, California

Southeastern Michigan Health Information Management Association Annual Meeting, Detroit, Michigan

2013 AHIMA Health Integrity Summit, Alexandria, Virginia

KUMC, Kansas City, Kansas

Grand Rounds Halifax Health, Daytona, Florida

Iowa Healthcare Collaborative (IHC), Altoona, Iowa

The 32nd Annual Colorado Health Symposium, Keystone, Colorado

Merge Live User Group Conference, Chicago, Illinois

Academy Health’s Innovation Station at ARM, Baltimore, Maryland

Mississippi Calling: Healthcare Symposium- ePatient Literacy, Jackson, Mississippi

Collaboration Across Borders, Vancouver, Canada

Walking Gallery III at St. Paul’s Lutheran Church and rededication of the mural 73 cents.

Genetic Alliance and Intermountain, Powerful Patient Data: Genomics and Family Health History in Health IT, Salt Lake City Utah

Kaiser Permanente Innovation Retreat, Denver, Colorado

California HIE Stakeholder Summit, Sacramento, California 

“The Role of Patient Engagement:  Diverse Perspectives from Our Panel of Experts” for The Children’s Hospital of Philadelphia’s, Center for Biomedical Informatics’ Annual Healthcare Informatics Symposium, Philadelphia, Pennsylvania

Medseek Conference, Austin, Texas  

Screening of 73 Cents and Q&A in Austin, Texas

NCAL HIMSS Chapter on Patient Engagement, Fairfield, California

ACMA (American Case Managers Association), San Diego, California

Genentech Meeting, San Francisco, California

HDX Conference, Boston, Massachusetts

Third Annual Crossing the Infrastructure & HITECH Meaningful Divide Symposium….”“The Patient and Technology:  Partners in Care,” King of Prussia, Pennsylvania

Maine Association for Healthcare Quality, Bangor Maine

Patient Safety Awareness Week, Calais, Maine

Our City Film Festival, Washington DC

Expectations: University Hospitals Case Medical Center has a Quality and Patient Safety Fair, Cleveland, Ohio

Artist onsite HIMSS Patient Experience with HIT, New Orleans, Louisiana

JHU/NHGRI Genetic Counseling Training Program at NIH, Rockville, MD

The Walking Gallery

We had a successful crowd fund earlier this year on Medstartr with the help of Cancer 101, raising $10,000.00 to pay for a mini documentary of the Walking Gallery.  The documentary is posted online and free to share.  Please share widely as it is a good way to explain the movement.  

The Walking Gallery of Healthcare from Eidolon Films on Vimeo.

The Walking Gallery now has 269 walkers who wear their jackets around the world.  There are 23 artists who have painted in the Gallery; seven new ones joined us in 2013.

We now number 300 jackets.  That is a mighty number.

The last jacket painted in 2013 is entitled “The Rolodex.”  I painted it for Cathy Collet who is better know as @ALSadvocacy on twitter.

As I was designing this jacket, Colton (our family friend and 4th grade pupil) asked what was the thing that I was painting.  I told him it was a Rolodex.  He asked, “What is a Rolodex?”  I smiled at this small digital native and explained before computers we kept our business contacts, friends and family’s information in these handy devices. 

As I explained the concept of a Rolodex, I thought of the many years that I would spend the quiet days between Christmas and New Year’ cleaning out old cards and making room for new ones.  I would pull card after card of sales reps who had moved away, friends whose Christmas cards came back “return to sender” and the cards of friends and family who had died. 

I looked at Colton and explained everyone in the Rolodex I was painting died as result of ALS.  He asked me what was ALS.  I explained it was a disease that made it hard to use your muscles.   First walking would be hard to do, then using your hands and then talking.   As the disease continued a patient would talk using their eyes, then finally they would not be able to breathe.  They would descend into the complete silence in the end.

Colton said, “That sounds like a hard way to die.”  I told him we could do something special for these people we lost.  We could tell their story.

I told Colton, “After Fred died I Googled him.  He had only two hits.  One was from the obituary in the paper and one was from American University where he worked.  Then I spent the last 4 years on medical advocacy and speaking about Fred.  Would you like to see how many hits Fred has now?”

Colton nodded yes and his eyes grew big as he looked at the result: Frederick Holliday II PhD had over 6 million hits. 

Online the names from a Rolodex live on.  We get to meet Cathy’s friends and family; Barbara Brenner, Betty Collet, Pat Dwyer, Ben Harris, Scott Curtis Johnson and Rob Tison.  We see them leave the dusty card and walk into an eternity of advocacy.

That is my 2013 in the review mirror.  The things we did, the people we met will create ripples in the years to come.  We will never really finish this time in our lives nor truly say goodbye to those we love; this time continues in our hearts and within our digital lives.

Tuesday, December 24, 2013

The Christmas Tree of 1987

I looked upon the crumpled box with its porcupine interior of evergreen branches and smoothed out the bill in my hand.  Scrawled in red sharpie the price of $1.00 drew me toward the dismembered tree.  I was so fortunate that I still had a little bit of baby-sitting money.  I was also fortunate that the yard sale with its precious box was only a block from my home, well within the dragging ability of my 15-year-old self.   The only problem was buying this tree would be an act of defiance.

The last time we had a Christmas tree and celebrated Christmas in my home I had been five years old.  That was the last time our family had any extra money.  I remember my mother giving me a Teddy bear that year and telling me wistfully that she would never be able to afford another gift so grand.   As the years past and bills were often left unpaid, celebrating was an extravagance that we could not afford.  So rather than take handouts or charity, my Father forbade much celebration of the blessed day.   He would let Mom make a nice meal if she did not have to work on Christmas.  He would let us visit our Aunt’s house and celebrate there in the days after Christmas.  But there was to be no Christmas tree in our house.

I paid the nice lady at the Church yard sale my dollar; she even threw in a few ornaments in with the purchase.  I hefted the unwieldy box and carried it home.  Our house door was a bit of a challenge to navigate with the heavy box, but I carried it through the living room and into my bedroom. 

Once in my bedroom, I dumped the contents upon the floor.  The tree was a post with many small holes and the evergreen branches had colors coded on each twisted metal end.  It took a while to figure out the coding system but soon I had a somewhat cooked tree with smattering of ornaments. 

With the rest of my babysitting money I bought items at the dime store that I could afford for my family. My mother would get a new coin purse and chocolate covered cherries.  I bought my brother Eugene thin mints.  The most extravagant gift would go to my sister Esther.  I found a wonderful Mickey Mouse doll at the gift shop I knew she would love.   I wrapped the gifts and put them underneath the Christmas tree that stood within in my bedroom.

Then I waited.

I waited to see what Dad would do.  I waited to see if he would smash it all.  I waited to see if he would whip me for my impudence.   He looked in my room at the tree. He looked at me. I crossed my arms across my chest and stared at him.  He worked his jaws and I saw the anger muscles in his face move threateningly, but he turned and walked away saying “You better keep that in your room, girl.“

I sighed with relief and knew I had just witnessed a Christmas miracle.

That Christmas was a slight reprieve in a time of great stress within our family, but in the face great adversity my defiance would only grow.  In the fall of 1989 Dad would threaten to kill us all and Esther and I would run away from home to live in a youth shelter.  A restraining order was issued against my father.  My mother filed for divorce.  By December Esther and I were home again and my father was out of the house.

The Christmas Tree of 1989 was set up in the living room and my Mother even set out her fragile Santa mugs so long hidden safely in a box.  In the days before Christmas, the doorbell rang.  Two strangers stood beneath our thresh hold with two paper grocery bags filled with wrapped gifts.  They were volunteers at the shelter who had heard the testimony I had given against my father.  They knew about our years without Christmas.

That year was the best Christmas ever.  The crooked tree stood so proudly in our living room with the lovely gifts underneath.

In the years since that very special Christmas, I worked 16 years in a toy store.  During the holidays people would buy gifts for poor children who otherwise would go without. I have been so honored to help customers make such purchases.  Sometimes as these customers would finish out their purchase they would say, “I just hope the child will appreciate this gift." I would assure them, “It is very much appreciated.”

This year I am a member of the Grantsville Rotary Club.  I was able to give gifts to children in need through the efforts of the Rotary Club in Garrett County Maryland.  I am so glad to give back as God has blessed me with good health and wholesome work.

This Christmas season I was able to host an arts workshop at Christ Lutheran Church in Grantsville.  It was a very snowy day so the attendance was light, but we were able to raise $100.00 with the help Diehl’s Ford, Grantsville Liquors and attendees.  The money raised went to the Dove Center in Oakland, Maryland.  The Dove Center is a shelter for those who suffer domestic abuse. 

Each year the Dove Center has a Christmas fundraiser called the Festival of trees. They auction Christmas trees created by local community members to raise money for the worthy cause.

They know the power of a simple Christmas tree to change the life of one family, as do I.

Merry Christmas and God Bless.
~Regina Holliday