Search This Blog

Loading...

Saturday, August 13, 2016

The First to Fall

       
On August 10, I was so excited to share that we had reached another milestone in the Walking Gallery.  Five years into our patient rights movement we had reached 400 members!   I even shared the post that lists where everyone lives.  I loved the picture blogger chose for the post.  It was me and Jess assembling the Walking Gallery in its lego form.

A lot of people read that post and reminded me they had moved to a new state or country.  I dutifully changed the post for each request.

Today I added a new country to the post.  I called it Heaven.  I placed Jess Jacob there and cried.

Isaac saw me crying and asked me why.  I told him Jess Jacobs died.  Our friend from DC we played legos with and visited in the hospital.


Jess had been fighting for her life for years. You would have never known that from looking at her.  She was a statuesque beauty who understood health policy.  She was gracious and kind and great at twitter. 



Jess Joined the Walking Gallery in 2012 and her jacket is number 211. "Is she okay?" Her patient story told about her POTS condition.  


When I painted her jacket, I depicted one of the times she fell faint to the pavement. She woke to find strangers looking down upon her.  She would laugh off such medical adventures and do her job and help her friends.  She helped build the lego Walking Gallery and helped prepare for the 2012 gathering in DC.  




In the summer of 2013, I moved to Grantsville and did not get to see Jess as much in person.  She began to have more problems with her care and we created a secret group on facebook to help Jess.  I recruited lovely friends who live in DC and who had never met Jess before but would come over to check on her and make sure she was okay.  Jess reached out to many other close friends and added them to the group so she could have advocates and people to help.  


For the past two years I have had to watch from afar as this wonderful woman grew sicker.  I watched her fight to keep working, fight to be admitted to hospitals, and fight to be believed.  

I watched as so many people fell away from her life as it became clear that she was not getting better.  
I asked her to join us at Cinderblocks 2 in May.  She said she would love to go but she thought she was probably too sick. 

This is the way I would like to remember Jess.  I see her at my dining room table building lego mini figures with Isaac. 

But I will always see another Jess, as I advocate for better healthcare around the world.  I will see her as a patient that the system failed to care for.  I will see her struggle and I will fight for change.

I will never forget she was the first to fall. We will miss her always. 

16 comments:

  1. Thank you Regina for speaking for Jess. May she rest in peace and continue to inspire us all.

    ReplyDelete
    Replies
    1. She will keep us passionate about the need for change.

      Delete
  2. Beautiful tribute to a beautiful individual. I'm sorry I was never able to meet her IRL.

    ReplyDelete
    Replies
    1. The way Jess rocked a twitter handle IRL was not necessary. We will miss her vibrant voice.

      Delete
  3. I am very sorry to learn it. I was acquainted with her professionally. She used to participate in the Health Technology Forum: DC I organize in Washington, DC. She really knew health policy. I had no idea she had an illness that would prove fatal.

    ReplyDelete
    Replies
    1. It shouldn't have been fatal in 2016, but it was complex and moving from DC to California allowed her to be near her family, but she could never really find a care system that truly cared for her. She couldn't really find that in DC either....

      Delete
  4. Thank you Regina. Beautifully said. I am weeping over my keyboard...

    ReplyDelete
  5. Simply: thank you for writing this and for so much more.

    ReplyDelete
    Replies
    1. I cried a lot writing that. It is a very sad day.

      Delete
  6. Although we did not need yet another wake-up call, Jess's death should remind us of all of why we are trying to change the fragmented, error prone system of disease care to one that values health.

    ReplyDelete
    Replies
    1. No we did not, and still people do not believe that the system fails many.

      Delete
    2. Thank you Regina for such a beautiful post,pics and tribute to Jess. Her life and her journey and now death vibrate and call deeply to all of us passionate about co-creating connected health systems that to not fail.

      Delete
  7. Thank you. Heartbreaking loss. I'm still in denial.

    ReplyDelete
    Replies
    1. I hope to see your tweets tonight as we mourn.

      Delete
  8. I did not know Jess but learned about her story from Twitter last week. We need more people like Jess in government and in the healthcare industry. I hope the patient advocacy community can continue to make progress so that some day people will no longer have to fight for high-quality, person-centered care.

    ReplyDelete
  9. Regina, you are such an extraordinary presence, giving voice to what so many of us feel.

    This all happened while I was away all weekend at an event... I never knew Jess like you, but all the stories I'm hearing now - my gosh. What I missed.

    This post and its images are such an achievement. And what a testament to Jess that she evoked SUCH powerful expressions from you and from Mandi.

    What I missed.

    ReplyDelete