Remembering JAWdess Susan Lowell Butler

By Sheila Gibbons

JAWdess Susan Lowell Butler was a prime example of someone who took action when life tossed her lemons: She made lemonade, not by the pitcher, or the gallon, or the barrel, but by the tanker truck. Diagnosed in 1995 with two primary cancers, breast and ovarian, both in advanced stages, she learned everything she could about what she had to do to heal, and then launched a plethora of projects that would help others stand a better chance of surviving cancer in its many insidious forms.

When Susan died of cancer December 18, 2010 what she inspired lives on. Her determination to spread understanding and knowledge about cancer, and improve results for people living with the disease, continues through organizations she helped start, such as the Ovarian Cancer National Alliance, and one she reinvigorated, the DC Cancer Consortium, which aims to deliver care to people in the nation’s capital fast enough to help them get better.

Before Susan became a cancer patient, she was an association executive, and before that, a teacher and education advocate. Written and rhetorical prowess were just two of the talents she displayed in her careers, and to those assets those of us who knew her well would add “being fearless” and “having a big mouth.” She championed causes she believed in and people she believed in. A former high school student of hers, Andrew W. M. Beierle, dedicated his novel, First Person Plural, to her in gratitude for her mentoring and faith in his talent. “To Susan Lowell Butler – wisdom, friendship, courage,” the dedication says.

Susan wasn’t a single-issue advocate, but women seemed to be central to nearly everything she became involved in. She fought for teachers’ rights, stature and benefits — an endeavor in which she partnered with her adored husband, Jim — and was recruited to the national staff of the National Education Association to direct communication programs. She became the executive director of Women in Communications, sharpening the organization’s focus on professional development and raising its profile. Later, she was CEO of the National Women’s Hall of Fame in Seneca Falls, NY, the cradle of American women’s rights. In her community of Alexandria, VA, she was a longtime member of the city’s Commission for Women and a prominent civic activist.

Susan was an early supporter of JAWS, attending camps back in JAWS’ formative years, talking strategy and structure, and engaging enthusiastically in an honored JAWS pastime: shopping.

Susan’s fight to recover her health led to her participation in a clinical trial and a long association with the National Cancer Institute, where she was a valued advisor on patient issues. She used her bully pulpit there to propel patient humanity to the forefront of cancer care, advocating for better patient support, better facilities, and better doctor-patient interaction. She made her case by writing articles and book chapters, giving speeches and lobbying politicians. In the position she held at the time of her death – executive director of the DC Cancer Consortium – she modeled the urgency needed to coordinate and deliver services that would save lives in the District of Columbia, which ranked sixth (among states and DC) in cancer deaths between 2001 and 2005, according to the Georgetown-Lombardi Comprehensive Cancer Center.

Susan’s cancer returned about two years ago. It was treated with surgery, radiation and chemo. Her health held up until just the last few weeks. I last talked with her the morning before she died. The previous day had been really difficult, but on this Friday morning, she answered the phone when I called and she sounded better. “I’m just sitting here, feeling very peaceful,” she said. She told me she planned to work on Consortium business for a few hours, then rest or read. By the next morning, she was gone.

Susan was brave, tough, kind, compassionate, funny, generous and loyal. Feminist to the core, she stood up for her sisters in every way she could. She worked harder than anyone I’ve ever met to help women attain professional opportunities, be recognized for their achievements and protect their health. I was very fortunate, and proud, to have her for a friend. We were all lucky to have had her as an advocate.