For Jess Jacobs: Friend, Fierce Patient Advocate, and Mythical Unicorn

Datapalooza, 5/10/16. Jess Jacobs, in green checkered shirt, discharged from the hospital 1 PM, picture taken 5 PM. Illness couldn’t stop her. It couldn’t even slow her down much. She took it with a smile. That’s who she was.

My friend, Jess Jacobs, died this morning. The world lost a bright light. And I guess I’m still too shocked to find the right adjectives to use to describe her. So I thought I’d stop trying, and share my favorite stories involving her, instead.

Jess was wonderful at telling her own story of life as a chronic patient. Her hospital admissions, doctor visits, and encounters with insanely insensitive airline and grocery store parking lot people frequently became fodder for live-tweeting sessions that reverberated throughout online healthcare and patient communities. These tales, unfolded in 140 character vignettes, were simultaneously tragic and hilarious. Revisiting her Twitter feed today, I’m struck by how truly FUNNY she was, even as she was facing injustice and indiginity that would have enraged Mother Theresa. Her way of screaming about the horrors she faced as to be snarky as hell. And we listened.

One incident that’s stuck with me: hospital bathroom doors and IV stands.

Talk about design fail.

And then there was the small matter of the outrageous cost of being a heart patient:

How about the time she used her Twitter feed as a medical record supplement?

Or the cruelty she took in stride when a cowardly, anonymous someone went out of their way to shame her in a parking lot:

Jess’ response to all the awfulness she endured was unflaggingly positive. The woman was truly magical in her ability to find humor and light amidst the darkness. Take her creation of Port Pegasus — a stuffed animal who came about as a way to reassure people that central lines don’t have to be scary.

I’m struggling with how best to honor her memory, and how to help her family understand the broad impact she had. She inspired so many people — many of whom, she may have never met, or even directly engaged. Her influence was far greater than perhaps even she knew.

In her final days, she was still dishing out truthiness in small and snarky increments. Behind the joke about cleavage and scars lies a gulf of fear that many feel: will we find acceptance, love, happiness as we are — scars and all?

You are loved, Jess. You are accepted. You found happiness — and you enriched the happiness of others. You mattered. And you will be remembered as far more than hyphy-hearted.

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