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Body & Mind: Last Wishes

8 minute read

What would you do if you found out you were going to die in six months? It’s a question many people contemplate at some point during their lifetime but few actually face. For Stephanie Williams, the question hit with urgency at age 31. She was traveling in Italy with the boyfriend she was hoping to marry when a phone call to her doctor brought bad news: chemotherapy hadn’t conquered the breast cancer that had been diagnosed a year earlier. Williams had less than two years to live.

Rather than resign herself to a limited life, Williams, a magazine journalist, leaped into action. In the summer of 2002, while recovering from surgery, she began the novel she had always wanted to write. Working through pain and the blur of medication, Williams

enlisted a friend and fellow writer to visit each day so they could write their respective novels together. At times, the frail author slept 16 hours a day, waking for a few hours to write, then dozing again. But her mother Faye and sister Laurie are convinced that writing distracted Williams from her illness and kept her focused on living. “It’s unfortunate that it took cancer to push Stephanie to write her novel, but it was so inspiring to everyone around her,” Laurie says. “She never wavered over writing the book and getting it published.”

Ellie McGrath, Williams’ former editor and mentor, founded a publishing house and secured a printer on the writer’s behalf. Meanwhile, Williams worked during weeks in intensive care, editing from her hospital bed. When Williams contracted pneumonia in May 2004, McGrath figured someone else would have to finalize the edits. “But as aggressive as her tumor was, Stephanie was just as aggressive,” says McGrath. “When I handed her the galleys, she pulled off her oxygen mask and pointed out an error in the typeface.” In June, Williams finally held copies of her novel, Enter Sandman, printed months ahead of schedule. At the book’s launch party three weeks before her death, Williams, thin and weak and wearing an outfit belonging to McGrath’s 9-year-old daughter, told a crowd of friends and colleagues that writing the book was so rewarding that the past few months had been the best time of her life. “I feel like I’ve already died and gone to heaven,” she said.

Williams didn’t live to see the Boston Globe call her novel “remarkable” and “compelling.” Although she would have loved the accolades, the point was getting the book out there. “She couldn’t marry the love of her life. She couldn’t have a child,” McGrath explains. “For a person dying so young, leaving something meaningful behind alleviated the anguish. This was her legacy.” That legacy also helped family members cope. “It was easier to let go of her because we saw her living life to its fullest,” says Faye.

If faced with a prognosis like Williams’, many people would succumb to depression. Others might escape by indulging in pleasure–traveling around the world or moving to a cabin in the woods. Many would simply concentrate on fighting the disease. Yet those who dedicate themselves to fulfilling a dream or final project may thrive best of all. “Often you see people outlive their prognosis when they pursue a mission,” says Elise NeeDell Babcock, author of When Life Becomes Precious: The Essential Guide for Patients, Loved Ones and Friends of Those Facing Serious Illnesses. “They’re focused, and they often take better care of themselves. They’re determined to make a difference before they die, and they want as much time as possible to do so.”

Jessica Grace Wing had always been ambitious. A graduate student in film, she had already co-founded a small New York City theater company when she learned, on the eve of her 30th birthday in July 2001, that she had terminal colon cancer. Knowing she would never complete a full-length film, Wing decided to use her remaining time and energy to compose an opera–not exactly a step down in ambition. Although her health deteriorated quickly, she never ceased working, composing on a laptop in her hospital bed. “Creating was her love,” says her father Bill Wing, “and I think writing music kept her alive longer.”

Unfortunately, it didn’t keep Jessica alive long enough to see her opera, Lost, performed onstage. Shortly after her death in July 2003, Lost, an adaptation of the children’s tale Hansel and Gretel, debuted at the New York International Fringe Festival. The sold-out audience was filled with weeping friends, colleagues and admirers. For family members, the experience was bittersweet. “She desperately wanted to see the opera performed before she died,” says Jessica’s mother Jennifer Schneider. “One of the most painful things to me is that she missed it by only three weeks.” Schneider attended many performances and had a professional DVD made of the show. “It connects me to her every time I watch it,” she says.

But it doesn’t always take a work of art to provide that kind of lasting connection or legacy. Matthew Wiederkehr’s final wish, after learning in December 2003 that he had fatal colorectal cancer, was to make a difference in the lives of other cancer patients. So Wiederkehr, then 33, a sales manager for Google and the father of two, asked a childhood friend, Randy Reiff, to help him start a foundation to make cancer treatment more humane. Throughout his illness, Wiederkehr repeatedly used the phrase “I promise” in conversations with his wife Jennifer Wiederkehr and Reiff. “I promise I’m going to get iPods put in these treatment rooms so patients can listen to music during chemo,” he would tell them. “I promise I’m going to do something to improve hospital administration.” The week before Wiederkehr died last September, he was hashing out the mission statement for his foundation. Afterward, Reiff and Jennifer settled on the obvious choice for a name: Matt’s Promise.

“For Matt, the foundation wasn’t about helping himself. It was about making a difference to other people,” says Reiff. He and Jen Wiederkehr are raising money for a new cancer facility in New Jersey that they hope to name for Matt. “Of course, Matt was upset and angry about his illness,” she says. “He was devastated. But being able to focus on this foundation helped channel those emotions in a positive direction.”

It’s important for both patients and loved ones to grasp that terminal patients aren’t just dying–they’re also living, stresses Therese Rando, clinical director at the Institute for the Study and Treatment of Loss in Warwick, R.I. “With that realization, patients often begin doing things to give their lives purpose and meaning,” Rando says. “People want to know they can continue to exist in the world after they’re dead. Who wants to be forgotten?”

And who wants to let their loved ones go unacknowledged? Ruth Jacobson, 62, is devoted to preserving the memory of her daughter Sarah, an independent filmmaker who died last year at age 32. Ruth amassed 27 cartons of materials related to Sarah’s work for the archives at New York University’s film library, her enthusiasm undimmed by such risqué titles as Mary Jane’s Not a Virgin Anymore. She responds to fan e-mail and keeps meticulous records of press clippings. “So many people remembered Sarah and were moved by her that letters keep coming,” Ruth says. “In a way that makes it easier, but it’s hard because I’m constantly reminded of the things Sarah wanted to accomplish but never will. She’ll never get an Academy Award.”

Ruth’s dedication mirrors her daughter’s attitude when Sarah learned she had metastatic endometrial uterine cancer. Immediately, Sarah began working harder than ever. Having already made several shorts and features, which won a cult following among college students and indie-film fans, Sarah was determined to make another feature film, creating storyboards in her hospice bed. She was unable to complete that project, but when her hair fell out from chemo, she and her boyfriend filmed each other shaving their heads into Mohawks for a short film called True Love Mohawk. In addition to that, the driven filmmaker organized a retrospective of her work to be shown at an art-house cinema in New York City. It opened five days after her death.

But Sarah had mixed feelings about this last project. “I think she knew the retrospective was an acknowledgment that this was the end,” explains her sister Lee. Two weeks before Sarah’s death, Ruth asked her daughter to decide the order in which films would be screened at the retrospective. “Not right now,” Sarah said. It wasn’t until the week before she died that Sarah told her mother, “I don’t have the energy to plan the order. You do it for me.” Ruth and Lee took her words to mean “I’m ready to let go.”

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