A Life Well Lived, Fights Well Fought – The Health Care Blog



I first became aware of Casey Quinlan in 2017, when she published an article in Tincture, which I was helping to edit.  In it, she discussed how she’d had her medical history and advance directive tattooed on her chest, out of frustration with the lack of health information exchange in healthcare.  As she said, “ALL. THOSE. FUCKING. FORMS. ON. CLIPBOARDS.”

Well, I thought: she sounds like an interesting person. 

I started following her on Twitter, enjoying her outspokenness and agreeing with many of her points of view.  Then early in the pandemic Matthew Holt started THCB Gang podcast, and I got to participate in many of them with her as a co-panelist. It was sometimes hard to get a word in edgewise, but when she was on we always knew it was going to be an extra-lively session.  And the stories she could tell…

I never met Casey IRL.  I never worked with her. I never even had a one-on-one conversation with her, unless you count Twitter replies.  There are large parts of her life that I don’t know anything about.  But, boy, the force of her personality, the strength of her will, the sharpness of her intellect, and the fearlessness of her spirit were always clear. 

She fought her cancer as fiercely as she lived her life generally.  We knew the end was inevitable, but it nonetheless was hard to imagine.  There have been outpourings of support on Twitter, on CaringBridge, and elsewhere. I have to mention in particular the efforts of Jan Oldenburg, who was there with her near the end and also took on the various bureaucracies on Casey’s behalf when Casey was no longer able to. 

Casey’s passing is a loss to her friends, her followers, and the patient community at large.  And to those of us who got to know her even a little bit. 

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