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.
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.
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.
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.