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

Remembering Jess Jacobs #UnicornJess

I

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

Confessions of a Lifeaholic

Guest Post by Gia Sison, MD

Sitting on my desk, writing from my heart, so much thoughts in my mind thus leading to the term - "Lifeaholic" defined as an addiction to life. When I first started this blog my entry was about my addiction to chocolates and now as I enter into my blogging cycle again I intend to take it on a different note and that is about the phenomenon of waking up each day, breathing and appreciating simple things - the term called life. You see it has gone into a whole new angle in me ever since I fought for it and survived it and now for even just a little bit a chance to share the lessons it has taught me. As they say lessons are cycles repeated in our lives and will never stop unless we learn the message that goes with it. Therefore I confess to the following:



Authenticity. A life well lived begins with appreciating your true and authentic self and admittedly this is a Herculean task, it takes time but the process in the end always pays off. To break free from what others would think and live life on our own terms I would say is the key to breaking free and it definitely feels good. No definition can ever embody what your true self is except for the one you set for yourself.



Courage. Fears can be real.. so real that it feels like being scooped up in a black hole but to embrace it is divine. We become more free every time we step out of our comfort zone. I have learned that the greatest danger in life is taking no risks at all. Admittedly still a lesson I have yet to learn in some occasions.



Kindness. No matter what religion one belongs to it all boils down to kindness. Each day as we meet new people or even old friends take it as an opportunity to be able to contribute and make the world a better place to live in. No preacher here but yes I must say it makes a big good difference.

Value. Living a life is doing what you value the most. What  motivates you? What makes you happy? What gives you energy? What brings an immense smile on your face whenever you envision it? One of the greatest key in living a life with purpose is doing what matters to you the most. Pursue it with passion and the rest shall follow.



Influence. Choose them well. Know them well and most of all never allow it or them to get the better half of you. Discern well.



Choices. Deciding on making one is already a choice in itself. No color aside from black and white in this aspect, no gray area. When I am personally faced with a choice be it difficult or not one thing leads me into walking towards that one road and that is the path that gives me inner peace. No regrets no looking back.



Love. Never lose sight of it and never lose your heart for it. All things may fade but only love remains.



And as I end just a gentle reminder to always stand up for something bigger than yourself. Believe that we exist and we are here for a purpose, a special reason - a mission. Live a beautiful life on your own terms and by all means be successful on your own terms too, not as how society would dictate to you. Bless your path.



"Go as far as you can see. When you get there, you'll be able to see farther."- Thomas Carlyle