Remembering Darcy Wakefield and her courage

Editor’s note: At UB Today press time, word was received of Darcy Wakefield’s passing on December 10, 2005, at age 35, in Cape Elizabeth, Maine.

By Patricia Donovan

Darcy Wakefield

Darcy Wakefield

In 2003, Darcy Wakefield, MA ’96, was a single assistant professor of English and inveterate runner hoping eventually to find a special man, fall in love and have a child. In fact, a child was, for her, a certainty, no matter what happened in the mate department.

That year the world blossomed for Wakefield, bringing with it the love of her life, Denver physician Steven Stout, and the birth of their son. It also brought with it the diagnosis of a devastating terminal illness, amyotrophic lateral sclerosis (ALS), or as it is commonly known, Lou Gehrig’s disease.

As might be expected, ALS sent Wakefield’s life and that of her family and friends into a vortex of disbelief, sorrow and loss. As might not be expected, however, it also opened a triumphant spring of laughter, gratitude, deep love and personal accomplishment.

In her memoir, I Remember Running: The Year I Got Everything I Ever Wanted—and ALS (Avalon Publishing Group, 2005), Wakefield recalls her first year of intense struggle with a disease that attacks nerve cells, causing loss of muscle function, often total paralysis, and, usually within five years, what she describes as “the worst kind of death I can imagine.”

Even as she tried to make sense of her diagnosis, she had to contend with the rapid deterioration of muscular function and the emotional and physical chaos that ensued. Her story, however, is not drenched in terror and loss. Rather, like Wakefield herself, it is the funny, brave and articulate tale of a life suddenly tracked on fast-forward.

For it was after her diagnosis, and despite the rapid progress of her illness, that Wakefield made a home in Maine with Stout; gave birth to their baby, Sam; wrote her popular and intensely personal book (which continues to garner national attention and critical acclaim); and became the focus of a national fund-raising campaign by her many supporters, including the “Girls Kick ALS” group (info@girlskickals.org), whose aim was to help fund any medical equipment and care Wakefield might need and to increase public understanding of ALS.

Before she lost her ability to speak—but never her “voice”—Wakefield discussed her experiences on National Public Radio in straightforward commentaries warmed by her wit and affection not only for what she had lost, but also for what was remaining. (These commentaries can be heard at the NPR Web site at www.npr.org/.)

No longer able to walk, use her arms or hands, or speak at this writing, she continued to communicate by e-mail with many friends (reportedly through a computer program that permitted her to select letters by using eye movements), who like Michael Frisch, professor of American Studies at UB, marvel at the upbeat quality of her letters. In some ways, she did not change at all. Ever the self-described “good girl” and “workaholic,” Wakefield handled her own legal work, made her funeral arrangements and wrote her own obituary. It is true that as an English professor she could not tolerate the idea of her bio being written poorly and “floating around out there,” so Wakefield wrote her own life account, she says, “So I could concentrate on living.”

Patricia Donovan is senior editor for humanities, informatics and architecture, University News Services.