There are magical moments.
There are moments when all the elements of a linear
life come together in a moment of friendship and awe.
Sometimes those moments are so very joyous. When Fred Holliday and I married, he
was ecstatically happy to have within the wedding party a friend from Northern
High School in Garret County, Maryland, a friend from College at Frostburg
State and friends from Oklahoma State University.
Six months later we would be working side by side at
Barston’s Child’s Play selling toys and helping customers.
Almost 16 years later he lay in bed and created another
party of friends. These would be
his pallbearers: a friend from high school, a friend from Frostburg, a friend
from Potomac Video and friends from American University.
Worlds collided to celebrate the life of one man. For many that is the end. The friends scatter to the wind and
both joy and sorrow is forgotten as we walk away each upon our paths.
But I know on Monday June 4th, 2012 Fred would
have been so happy. That night the
Gallery Walked, that night people gathered from all over the nation to tell
their tales of love and loss.
The friends I have made throughout this journey stood side
by side as though time had slipped and for one sparkling moment we played
together.
I worked for 12 years selling toys at Barston’s Child’s
Play. On this night, we brought
play into medicine. The entire
Walking Gallery was brought to the Kaiser Permanente Center for Total Health in
the form of 160 Lego figures, one for every member of the gallery. I wanted every member of the Walking Gallery to be there in this small way. There were so many walkers like Ben Miller who watched from afar.
We created a Lego map of the US with recognizable monuments due to the fact that Child’s Play had all the Lego architecture sets.
We created a Lego map of the US with recognizable monuments due to the fact that Child’s Play had all the Lego architecture sets.
Wen Dombrowski, Jess Jacobs, Stuart McLean, Jake Miles-McLean, Nate Miles McLean, Kait B. Roe, Peter Guerber and myself assembled this mammoth project.
We had a lot of fun.
Robin Miles McLean, Ben Merrion and Peter Guerber assembled nametags. Each nametag had the attendees name as well as the high school they attended as well as city and state. I was amazed how many advocates went to high school in New Jersey! I was also happy to see one other Walker from Oklahoma. We even found that two of our walkers attended the same academy years apart.
Morgan Staney-Kominers from Child’s Play recently joined the
Gallery and ran into a good friend from high school who now works in the health
field.
Morgan was also glad to see Jon Francke from Potomac Video among the attendees.
The reason we had high schools on our name tags harkens back to a post I wrote a few months back: All Fields Required. Some of us working in patient advocacy circles only have a high school degree. This night no one worried about who had an MD after their name and who had a PhD. We were all meeting at the same point in time and we were joyous.
As the evening progressed, the noise level rose as each of
us embraced the other. New walkers
were handed their jackets and soon it was time to sing. First Gallery member Marsha Goodman
-Wood sang “Nobody Likes Viruses and Germs.”
Then members Ross Martin, Dave deBronkart, Keith Boone and Casey Quinlan sang “Give Me My Damn Data.”
Then David Hale treated us on his Uke to “My Little Data Shack.”
Next Isaac and I with a little help from Ben Merrion sang a parody of a parody. Building on a Lego/Minecraft theme little Isaac wanted to sing about big data.
Then members Ross Martin, Dave deBronkart, Keith Boone and Casey Quinlan sang “Give Me My Damn Data.”
Then David Hale treated us on his Uke to “My Little Data Shack.”
Next Isaac and I with a little help from Ben Merrion sang a parody of a parody. Building on a Lego/Minecraft theme little Isaac wanted to sing about big data.
HIT Dynamite (Feel free to sing along to the tune from
Dynamite)
“I came to dig dig dig dig
I’m gonna get data make it big big big big
The Triple Aim is my trig trig trig trig
Walk the Gallery that’s my gig, gig, gig, gig
yeah, yeah
There must be something I can craft
to ease the burden of this task
yeah
I shoot my thoughts into the air sometimes
saying RHIO, gate keeper's KO'd
Boot my computer and now the data’s mine
saying ay-oh, but not today no
So then I'll go to work
under the planetree
I'll prove myself the
joy of HIT
cause We’ll use these backs
We'll build a big city
and data mine it
using HIT
I came to blow blow blow blow
up bad care models you have known known known known
embracing HIT at home home home home
And in the Gallery you shall roam roam roam roam
yeah, yeah
And there’s here creeps who want to rob
all of your data that's their job
yeah
I shoot my thoughts into the air sometimes
saying GAO, MIB is KO'd
Cloud’s hosting and now the data’s mine
sayin' ay-oh, MU2 knows
And then I'll head back home
where I'll smile with glee
that now I am part of
lots of HIT
'cause I rule my world
my data lives in me
I'm-a change my care
with my HIT”
Then we began to walk around in circles with our friends
rejoicing in the Walking Gallery.
It was so good to see children walking among us. Three new artists joined the Walking Gallery 6 year-old Isaac, 5 year-old Jonah and 7 year-old Leela. 14 year-old Abigail Boone proudly joined us as a new walker and 13 year old Freddie débuted his newly designed jacket.
It was so good to see children walking among us. Three new artists joined the Walking Gallery 6 year-old Isaac, 5 year-old Jonah and 7 year-old Leela. 14 year-old Abigail Boone proudly joined us as a new walker and 13 year old Freddie débuted his newly designed jacket.
There were other children here this day that were paintings
upon backs. Alan Greene’s son, now
a junior in high school became an infant again. A child version of her future husband embraces the
child Sunnie Southern. Karen Herzog's infant daughter Sophia is still alive and rosy cheeked upon her mother's back.
On Ted Eytan’s back both Ted and I peer out as children who look concerned. But in this moment we are safe and loved and surrounded by friends who support us.
On Ted Eytan’s back both Ted and I peer out as children who look concerned. But in this moment we are safe and loved and surrounded by friends who support us.
Soon it was
time to leave. We hugged and
kissed and said good-bye until next year when we will gather again in another
moment of joy.
Regina, thank you for masterfully tying us all together. Degrees are the "pass" into medical conventions and I learned that membership in organizations are essential too. Harmed patients happen one soul at a time and being a victim is a lonely prospect. Your approach addresses both the degree and the organization arguments for why not to include the patient. The Walking Gallery will get our damned data which allows us to work with medical providers (that we determine) care about our health first. You have earned an "A" -in that way (only!) Fred's doctor was right! It is to benefit all that you are tenacious and passionate.
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