Jessie Gruman: Tribute to a Tightrope Walker

Jessie Optimized
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.

Some individuals with her medical history might have written a “how to” book off the top of their heads. Jessie interviewed 200 people, and she conveyed what she found in a tone that was friendly, informed and respectful. Always, always, she “put in the work,” whether it was research or carefully crafted blog posts, articles and books. If you didn’t do the same, she’d call you on it.

Jessie’s hard work, not her hard luck, is what led to the awards, honorary degrees and appointments to prestigious membership organizations. The foundation grants and board members she collected for her Washington-based Center for Advancing Health reflected her academic and policy chops.

Jessie lived in New York with her husband, also a scientist, and she had a life apart from the policy crowd. Diane von Furstenberg hosted her New York book party at a private club for artists and writers. In D.C., the words “Diane von Furstenberg” were more likely to be followed by “knock offs.”

Jessie was an early and influential member of the Society for Participatory Medicine, and there’s a touching tribute on the SPM blog page. On Twitter, tweets in her memory use terms like “wisdom, eloquence and grace,” “brilliant,” “visionary” and “incredibly kind.”

As a friend and mentor, Jessie will be irreplaceable. But her good name and good deeds will live on.

Michael Millenson is a patient safety expert, consultant, former journalist and long-time THCB contributor.

6 replies »

  1. Virginia Sloan, Jessie Gruman’s sister-in-law, asked CFAH to share this note from Jessie’s family:

    Jessie’s family is incredibly overwhelmed and honored by the outpouring of love, admiration, and grief following Jessie’s death. Though we knew this was likely Jessie’s last cancer, she and Richard, Jessie’s husband, and my brother, fought so tenaciously for so very long.

    A light has gone out in our family, and we greatly appreciate knowing that you share our devastation, shock, and loss. I’m sure you will hear more from us, but please know what a comfort it is to read all of these blogs, tweets, and other posts.

    Thank you,
    Virginia Sloan

  2. I am always amazed at people stricken by devastating disease who expend their energy outward to the community for the greater good. I hope her legacy and work endure.

  3. Jessie Gruman was an awesome person, a great friend, and a tremendous colleague. She always responded to my requests for help on understanding how doctors and patients can better work together. When I met her at the Foundation in DC, it was like we had been friends for years. When I would write a blog about patient engagement, she would always contact me to encourage me to keep posting. I miss her a lot. She is someone that was very special.

  4. A beautiful and smart tribute to a great person. You captured exactly how I’m feeling right now about this huge loss. Thanks.

  5. I am sorry to hear of her death.

    I did not know her personally, but she and I followed each other on Twitter and had many interesting, fun, and more often than not, educational exchanges. Unlike many healthcare “experts” active on social media, she had no ax to grind and no fluff to sell. She helped people understand the industry and use it more effectively and to seek to feel better no matter their current state. I never guessed she was so seriously ill.

    My prayers and sympathy to her family and friends.