Joining the Walking Gallery of Healthcare
Raising awareness before saying a single word, I will wear my jacket with pride.
“One morning, I walked past my Dad as he sat watching television. On a small table beside him, I saw the most fascinating object. It was a long thin rectangular plastic case, just a bit longer than my hand. It had a multitude of letters, numbers and buttons on it, and when I pushed a button, a little red light came on! I said to my Dad, 'this looks fascinating!
Information and resources suitable for the survivor and loved ones was difficult to find post-encephalitis. My family struggled without success to find out what to do with me now I was home. In the year 2000 I joined that struggle, creating Encephalitis Global’s first online discussion forum where survivors and caregivers share information and support on a daily basis. I have now worked to raise encephalitis awareness for more than fifteen years. As of February 2015 our Encephalitis Global Inspire Forum has welcomed more than 3750 people from around the world. We are described by the International Encephalitis Consortium as “the largest online global support network worldwide” averaging ten new members and more than 200 new messages each week. Unfortunately, many Brain Injury Associations in North America and beyond still do not mention encephalitis.Too often a person is diagnosed, their life is saved, then they are sent home to cope as best they can. Social media has become an important lifeline to these people.
I recently read an article online about Regina Holliday and the Walking Gallery of Healthcare. The Walking Gallery is an amazing selection of public art - from murals on walls of buildings to more than 350 mini-murals painted on the backs of jackets. These jackets are worn with pride internationally by patients and medical professionals who are health advocates with a message to share. An excellent video explaining Regina's mission can be viewed at: https://vimeo.com/
I forwarded my jacket and my story to Regina in 2014. Regina recently painted my jacket and has shared a photo online of her work. She titled this piece "A pause for station identification."
“You spoke about the marvelous remote control that you did not understand. That started the vision.
Your journey to become yourself is a type of station identification and that is also your name.
I modified the Indian head calibration that allowed you to correct the horizontal and vertical on the old style TV sets to be the logo of your organization, as what you are doing is helping patients recalibrate. Also this is older imagery and sometimes that can cause folks with memory loss to feel comforted even if they don't know why they are comforted.”
Members of The Walking Gallery of Healthcare appear at medical events and health conferences, striving to draw attention to the need for patient voices to be a part of the healthcare system. Personally I shall wear my jacket with pride while raising encephalitis awareness as I am now a member of The Walking Gallery of Healthcare.
We are the Gallery that walks.
We are the Patients that wear our stories on our backs.