Monday, August 22, 2016

More Than a Memory #UnicornJess

As many of you know, we all suffered a profound loss on August 13th, 2016 when patient advocate, former fed, and magical unicorn Jess Jacobs left us at age 29. On Saturday, about 35 of us gathered near DC to grieve together and celebrate her life. I shared this song.


More Than a Memory

Got the news just the other day
You departed far too soon
Though it had been a while
Since I'd seen that smile
Heartbreak filled the room

Your stories made us see
The heart of healthcare’s tragedy
How this unicorn
Whose loss we mourn
Got snared by failed reality

You're now a part of history
But in a magic way 
You fold into the mystery
Of who we are today

And now you are, you are 
More than a memory
More than a used to be
You're a living thread
In the tapestry
Of everyone I see
More than a memory 
You are a part of me 
You are, you are, you are
More than a memory

We all cheered for you
Praying that you'd pull through
But even your Team Jess
Couldn't fix the mess
Couldn't make the system
Treat you true

You left the pain behind you
No more tears or rage
Now from the other side you compel us to
Keep working for a change

And now you are, you are
More than a memory
More than a used to be
You're a living thread
In the tapestry
Of everyone I see
More than a memory 
You are a part of me 
You are, you are, you are
More than a memory

Someday we'll rise to take the prize
You've inspired us to win
I hope we all can live our lives
As a testament till then

So we -- like you -- can be
More than a memory
More than a used to be
And be a living thread
In the tapestry
Of all who live after you and me
More than a memory 
A part of everything we see
So we -- like you -- can be
More than a memory

Ross D. Martin, MD, MHA
For Jess Jacobs


Sunday, August 14, 2016

Remembering Jess Jacobs #UnicornJess

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Yesterday, our tribe of vocal sojourners and patient advocates lost one of its brightest lights. Jess Jacobs passed away after a long, amazingly chronicled ordeal with postural orthostatic tachycardia syndrome (POTS) among other complex medical issues. Jess, ever beaming (I'm not kidding - even when she was in the middle of yet another medical ordeal - she radiated positivity and joy), took great pains to describe the indignities of being a cog in the healthcare machine.

Yesterday, twitter erupted with messages about Jess's passing. Friends like Mandi Bishop, Regina Holliday, and Carly Medosch posted their raw remembrances with equal parts of laughter and rage.

Tonight, we will gather virtually for a tweet chat where we will honor Jess and bask in her light. Here are the details...

When: Sunday, August 14, 2016, 8pm to 9pm ET
Where: http://twitter.com
Hashtag: #UnicornJess
Moderator: Ross Martin
Topics:

  • T1: Tell us about when Jess made you smile or laugh
  • T2: Tell us about when Jess made you think
  • T3: Tell us about when Jess made you act
  • T4: What tangible actions can we take to we honor Jess's memory as our "First to Fall" in The Walking Gallery?
  • T5: Open sharing on other topics - we will make sure there is time for folks to share other thoughts and ideas.
If you've never participated in a tweet chat, here is a beginner's guide that can help you join in.

An in-person gathering will be hosted by Whitney Zatzkin and Donna Cryer for Saturday, August 20th, from noon to 5pm in Burke, VA near Washington, DC. You can register to attend and receive more details on the evite http://www.evite.com/event/006C5O3DADMZQ4UA4EPGMMF6HNMG7U?utm_source=NA&utm_medium=sharable_invite&utm_campaign=send_sharable_link

Update 8/17/16
The family has asked that donations be made in Jess's memory to The Waking Gallery. You can make donations through GoFundMe at https://www.gofundme.com/h2dsdwe4