ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, January 1, 2014

The Rolodex - Part II

On Monday Regina Holliday and I corresponded briefly about some logistical details for the Walking Gallery jacket that she was about to paint. In closing I mentioned that I had just received word of the death of yet another of our online ALS advocates.

 Every time I get one of these messages, it's like ALS has sucker-punched us again. It doesn't stop. Over and over they die. Regina graciously asked me if I wanted to include this gentleman in the Rolodex painting that she was still designing. Yes.

Scott Johnson was Grizzly15 on the ALS message boards and @scottcjohnson2 on twitter. Read his tweets. He pushed and prodded for constructive change for vets with ALS and for the ALS Registry. 

Very early on Tuesday morning I woke up to a message from Regina that included the painting.  Number 300 in the Walking Gallery, "The Rolodex,"  was finished.


Wow.  She got it!  There's a lot there.  There's a lot to talk about.

Then yesterday afternoon Regina posted a year-end message in her blog that shed even more light on this remarkable piece --

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 BrennerBetty ColletPat DwyerBen HarrisScott Curtis Johnson and Rob TisonWe 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.
Let the conversations begin.

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