When I heard that Jessie Gruman had died, that her powerful voice on behalf of patients had been stilled and gone silent years too soon, I thought of Phillipe Petite, the high-wire artist who famously tread a cable strung between the two World Trade Center buildings back in 1974.
Jessie’s balancing act did not take place on so visible a stage, but her death-defying dance equally amazed those who knew, worked with, respected and loved her.
On the one side, she was persistently pulled down by cancer. There was Hodgkin’s lymphoma in 1973 when she was just 20, setting the stage for repercussions of treatment that would dog her ever after: cervical cancer eight years later; colon cancer in 2004; and a diagnosis of stomach cancer in 2011 that returned after a too-brief hiatus. There was also pericarditis, a dangerous heart condition.
Counterbalancing that burden was the uplift of a woman whose “bouts” with cancer shaped, but never defined her. She was a social psychologist who was an early part of work on the chronic care model; the founder of a policy and research center dedicated to empowering patients in health care and in health; a prolific writer and author of a landmark book on what to do with a diagnosis of serious disease; and for many, a personal inspiration.
On the morning of July 14, Jessie finally fell off the tightrope, as we all must eventually do, dying at home. She was 60 years old.
You can’t really understand the outpouring of affection, appreciation and aching loss Jessie inspired just by browsing her impressive bio. She was sharp and funny, with wry asides directed at any pretension exhibited by allies or adversaries alike.
However, Jessie did far more than dish and dis. She was a superlative builder; of an organization, yes, but more importantly, of a body of work that prompted government policymakers and uncounted health care organizations to pay greater attention to the unmet needs of patients. She also reached out directly to fellow patients to help. In all these activities, she married intellectual rigor and careful attention to evidence – techie trendiness, for example, did not impress her – with emotional honesty. Jessie spoke what often goes unspoken, candidly acknowledging how horribly scary and alone it feels to be seriously ill.
As she wrote in her book, AfterShock: What to Do When the Doctor Gives You – or Someone You Love –a Devastating Diagnosis:
Every time I have received bad health news, I have felt like a healthy person who has been accidentally drop-kicked into a foreign country: I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map and I desperately want to find my way home.
Jessie told one interviewer: “I want people to know how to take care of themselves and pay attention to the urgency of their situation even when their heart is broken.” Later, she repeated that theme in an article for Health Affairs that called for policies to support patients and their families in their time of distress.Continue reading…