4 min readAug 13, 2016


My friend, Jess Jacobs

Added 8/17/16: Jess Jacobs’ family has asked for donations in her honor to go to The Walking Gallery of Healthcare. Jess had her own Walking Gallery jacket painted with her story (middle in the photo below) and was a passionate supporter of the cause founded by Regina Holliday. You may donate here:

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Mom said I should write a eulogy. “I can’t” I croaked between sobs, over the phone in the lounge area of the Nordstrom’s bathroom. Someone else will write about Jess. I am too sad.

The phone in my hand is probably the strongest connection I had to Jess, the most visible reminder. Even though I was incredibly lucky to become real life friends with Jess, most of our friendship happened over our smartphones — text, Twitter, or even a Facebook group where we kept tabs on her frequent hospitalizations. For a while, when Jess was still healthy enough to work, I worked a block away in DC. The first time I met Jess, started with a health tech happy hour and ended in me learning how to set up the tubing so she could get fluids via her chest port. (I have had Crohn’s disease since age 13 and have done my own NG tube placements and PICC line care, so I was more qualified with sick kid cred than the other guys.)

Jess and I talked about ourselves as sick kids. She loved unicorns, mermaids, the DC cherry blossoms, and crafts. Jess spent hours in the bathtub and joked that she was part mermaid.

Being friends with Jess meant always being aware of how sick she was. I spent a lot of time helping her get medications at home, cleaning up, and even sometimes (although she hated it) driving her to the ER. I fought nurses for her and with her. I encouraged her to drink her Ensure (earning me the cherished nickname of “tough mom”) and got the personal cell phone number of one of her doctors.

Being friends with Jess meant always forgetting how sick she was. Jess was incredibly kind and caring. She would create elaborate care packages and mail them to friends. You’d wonder how she pulled it off — wasn’t she just in the hospital herself? She was always online with friendship and encouragement. She was always smiling, laughing, even if it was at the absurdity of life with chronic illness.

Jess would come to visit and pull a huge bag of saline and tubing out of her purse. We would find a high place to hook the bag and we would keep on with our girls’ night. (I would probably also continually foist electrolyte water on her — it’s what tough moms are for.)

Jess wasn’t just a health care user — she graduated with a masters degree from Georgetown, held a prestigious fellowship at the FDA, and then worked in the private sector. She was on countless panels and held professional credentials. Jess knew everyone and wasn’t egotistical about it. She was happy to introduce you. She was a fantastic health advocate — often with her own story as the example, like the many times she live tweeted her hospitalizations. If she had reservations about being so public, I never heard them. Even when complaining about unsterile port access techniques got her abuse from nurses, or kicked out of hospitals, Jess kept going. Jess was doing extremely important work, long after she was able to wear a suit and show up to an office.

I was going to say what I wanted people to learn from Jess’s life, but mostly what I want is for Jess to still be here. We spoke on Twitter one day ago. I don’t believe I won’t hear from her again soon.

I want people to understand how screwed up our health care system is. Jess was incredibly smart, and well connected, and we could not make it work that she could get well, or even stable. Her long pain, the abuse she suffered, and the fact that she is not here now are all absolutely unacceptable. Jess’ life was a window into a work I understood somewhat, a window into a world that most people don’t understand at all. We need to do better for all the other sick kids that grow up to be sick adults, for all the sick everyones. We need to do better, not to make Jess’ life mean something. Jess’ life already meant a lot. We need to do this work — policy and love, to make our own lives in some small way measure up.




Chronic illness advocate/patient. @CarlyRM on Twitter